>>WHEN IT WAS CREATED IN 1962, NICHD WAS THE FIRST TO FOCUS ON THE ENTIRE LIFE PROCESS. WHETHER A SPECIFIC DISEASE OR BODY SYSTEM. SINCE THEN, NICHD HAS REMAINED DEDICATED TO UNDERSTANDING ALL ASPECTS OF HUMAN DEVELOPMENT, INCLUDING EVENTS AND CONDITIONS THAT WE ALTER ITS COURSE. >>INNOVATION IS CENTRAL TO OUR MISSION FROM THE VERY BEGINNING. IN 1965, NICHD FUNDED RESEARCH SHOWED THAT A BLOOD SPOT TEST SAFELY AND EFFECTIVELY IDENTIFIED NEWBORNS WITH PKU, ALLOWING TREATMENT TO BEGIN SOON AFTER BIRTH, AND PREVENTING INTELLECTUAL DISABILITY. TODAY NEWBORN SCREENING PUTS MILLIONS OF BABIES ON THE PATH TO GOOD HEALTH RIGHT FROM THE START. WE STEPPED INTO THE INTERNATIONAL SPOT LINE IN 1972, WHEN A GRANDY SHARED A NOBEL PRIZE FOR DISCOVERY ON ANTIBODIES. RESEARCHERS HAVE SINCE RECEIVED 20 NOBEL PRIZES FOR THINGS THAT IMPROVE LIVES EVERY DAY. INNOVATION FROM NICHD INTRAMURAL SCIENTIST AND HER COLLEAGUES LED TO FDA APPROVAL OF THE FIRST HOME PREGNANCY TEST IN 1978. THESE TESTS NOW PROVIDE PRIVATE, SPEEDY AND ACCURATE RESULTS WELL BEFORE THE FIRST PHYSICAL SIGNS OF PREGNANCY AND HAVE INSPIRED OTHER AT-HOME TESTING METHODS LIKE THOSE FOR COVID-19. IN 1987, INNOVATIONS IN VACCINE TECHNOLOGY LED BY INTRAMURAL SCIENTISTS JOHN ROBBINS RESULTED IN THE FDA APPROVAL OF A SAC SEEN FOR HIB. THE VACCINE HAS VIRTUALLY ELIMINATED HIB AS A GLOBAL CAUSE OF DEATH OR INTELLECTUAL DISABILITY AND THE NICHD DEVELOPED TECHNOLOGY HAS MADE OTHER LIFE-SAVING VACCINES POSSIBLE, SUCH AS THOSE AGAINST KNEW MAPNEUMOCOCCAL DISEASE. INNOVATIONS IN CLONING AND CHROMOSOME MAPPING EXCITED A REVOLUTION IN GENETIC ENGINEERING. IN 1991, GRANTEE STEVEN WARREN AND COLLEAGUES DISCOVERED THE CAUSE OF FRAGILE X SYNDROME. WE CONTINUE TO INNOVATE DURING THE HIV/AIDS CRISIS IN THE 1980s AND 90s, AND LEADING AND PARTNERING ON RESEARCH TO UNDERSTAND HOW HIV AFFECTED PREGNANCY IN NEWBORNS. 1994, A STUDY WE COFUNDED SHOWED TAKING A REGIMEN OF AZT DURING PREGNANCY SAFELY AND EFFECTIVELY REDUCED THE RISK OF HIV TRANSMISSION TO THE FETUS. THE RATE OF PERINATAL HIV TRANSMISSION IS NOW LESS THAN 1% IN THE UNITED STATES. INNOVATION ALSO HELPED US TO ELIMINATE NEW ASPECTS OF HUMAN DEVELOPMENT. IN 2004, RESEARCH WE FUNDED DEMONSTRATED THAT EFFECTIVE -- INSTRUCTION CHANGED THE STRUCTURE OF THE BRAIN. AFTER DECADES OF OUR WORK ON WOMEN'S HEALTH, IN 2014, THE FDA-APPROVED THE FIRST TREATMENT FOR ENDOMETRIOSIS-RELATED PAIN. THIS PILL IMPROVES QUALITY OF LIFE AMONG PEOPLE WITH THIS COMMON CONDITION AND MAY DELAY OR ELIMINATE THE NEED FOR SURGERY. IN 2019, NICHD FUNDED RESEARCHERS USED 3D PRINTING TO CREATE IMPLANTS THAT PARTIALLY RESTORED FUNCTION IN ANIMALS WITH SPINAL CORD INJURIES. THE IMPLANTS MAY SOMEDAY HELP PEOPLE RECOVER COMPLETELY FROM SPINAL INJURIES. MOST RECENTLY, WE MET THE CHALLENGES OF THE COVID-19 PANDEMIC THROUGH ESSENTIAL RESEARCH ON POPULATIONS WITH UNIQUE HEALTH NEEDS, INCLUDING PREGNANT PEOPLE, CHILDREN, AND PEOPLE WITH DISABILITIES. AMONG THE MANY COVID-RELATED INNOVATION IS MACHINE INTELLIGENCE AND MACHINE LEARNING TO BETTER UNDERSTAND INFLAMMATORY SYNDROME IN CHILDREN. >>EUNICE KENNEDY SHRIVER ONCE SAID, IF YOU DON'T HAVE AN IDEA THAT MATERIALIZES AND CHANGES A PERSON'S LIFE, THEN WHAT HAVE YOU GOT? FOR 60 YEARS, NICHD HAS BEEN CHANGING LIVES THROUGH RESEARCH. BY BUILDING AND FOSTERING A COMMUNITY OF SCIENCE FOCUSED ON THOSE WITH THE GREATEST HEALTH NEEDS. NICHD CONTINUES TO IMPROVE HEALTH ACROSS THE TRAJECTORY OF HUMAN DEVELOPMENT. WE LOOK FORWARD TO 60 MORE YEARS OF INNOVATION TO PROMOTE HEALTHY PREGNANCIES, HEALTHY CHILDREN, AND HEALTHY AND OPTIMAL LIVES. >>AND NOW, PLEASE WELCOME NICHD DIRECTOR, DR. DIANA BIANCHI. >>GOOD MORNING, EVERYONE. AND WELCOME TO NICHD'S 60TH ANNIVERSARY SYMPOSIUM. WE'RE DELIGHTED THAT YOU'RE HERE, AND HOPE THAT YOU ENJOY TODAY'S PROGRAM. ON THIS DAY, THIS EXACT DAY IN 1962, CONGRESS ESTABLISHED NICHD AS THE FIRST NIH INSTITUTE TO FOCUS ON THE ENTIRE LIFE COURSE. RATHER THAN A SPECIFIC DISEASE OR ORGAN. THERE HAVE BEEN SEVERAL OTHER FIRSTS SINCE THEN, WHICH WE'LL HIGHLIGHT DURING TODAY'S PROCEEDINGS. WHILE IT IS INSPIRING TO REFLECT ON WHAT WE'VE ACCOMPLISHED IN THE PAST 60 YEARS, MUCH OF OUR AGENDA TODAY WILL FOCUS ON THE FUTURE. WE WILL EXPLORE POTENTIAL PATHWAYS THAT OFFER NEW OPPORTUNITIES FOR SCIENTIFIC DISCOVERY AND ADVANCES IN MEDICAL PRACTICE. WE'LL DISCUSS HOW HARNESSING EMERGING TECHNOLOGIES CAN HELP US TO BETTER UNDERSTAND HUMAN DEVELOPMENT, IMPROVE REPRODUCTIVE HEALTH, ENHANCE THE LIVES OF CHILDREN AND ADOLESCENTS, AND OPTIMIZE ABILITIES FOR ALL. THE THEME FOR TODAY'S SYMPOSIUM IS: HEALTHY PREGNANCY, HEALTHY CHILDREN, AND HEALTHY AND OPTIMAL LIVES. THIS MAY SOUND FAMILIAR PLAN. LIKE OUR 60TH ANNIVERSARY COMMEMORATION, THE VISION STATEMENT IS DESIGNED TO LOOK FORWARD AND CREATE A MENTAL IMAGE OF THE IDEAL STATE WE WISH TO ACHIEVE. WE HOPE THAT THIS THEME RESONATES WITH YOU THROUGHOUT TODAY. OVER THE PAST 60 YEARS, NICHD'S ACCOMPLISHMENTS HAVE TOUCHED EVERY FACET OF OUR EVERYDAY LIVES, AS YOU HEARD IN THE PREVIOUS VIDEO. OUR CONTRIBUTIONS TO SOCIETY INCLUDE PIONEERING AND EXPANDING NEWBORN SCREENING FOR GENETIC AND METABOLIC DISORDERS. , INVENTING VACCINES FOR CHILDHOOD BACTERIAL DISEASES, DEVELOPING TECHNOLOGY THAT LED TO THE FIRST HOME PREGNANCY TEST, AND NEARLY ELIMINATING PERINATAL TRANSMISSION OF HIV IN THE UNITED STATES. NICHD ALSO CONTRIBUTED THE EMERGENCE AND ELEVATION OF SCIENTIFIC DISCIPLINES. FOR EXAMPLE, BY FUNDING RESEARCH ON BIRTH DEFECTS AND INTELLECTUAL AND DEVELOPMENTAL DISABILITIES, OR IDDs, NICHD ESTABLISHED IDDs A AS A RECOGNIZED FIELD OF RESEARCH AND CREATED A NEW DEVELOPMENTAL PEDIATRIC SUBSPECIALTY. OVER THE YEARS, NICHD HAS CONTINUED TO FOCUS ON OVERLOOKED TOPICS, INCLUDING MATERNAL HEALTH, CONTRACEPTION, THE INCLUSION OF PREGNANT AND LACTATING INDIVIDUALS IN RESEARCH, RARE DISORDERS, GYNECOLOGIC HEALTH, AND MEDICAL REHABILITATION. I'M EXCITED TO BE JOINED TODAY BY SEVERAL ESTEEMED SCIENTISTS, ADVOCATES AND POLICY PROFESSIONALS, WHO WILL OFFER THEIR VISION AND INSIGHTS. I'M TRULY GRATEFUL FOR THEIR CONTRIBUTIONS TO WHAT PROMISES TO BE AN ILLUMINATING AND ENGAGING DISCUSSION. OUR FIRST SUCH ESTEEMED SPEAKER IS DR. LARRY TABAK. LARRY IS CURRENTLY PERFORMING THE DUTIES OF THE DIRECTOR OF THE NATIONAL INSTITUTES OF HEALTH, OFFICIALLY TAKING OFFICE ON DECEMBER 20TH, 2021. HE HAS PREVIOUSLY SERVED AS PRINCIPAL DEPUTY DIRECTOR AND THE DEPUTY ETHICS COUNSELOR OF NIH SINCE AUGUST 2010, AND BEFORE THAT, AS THE DIRECTOR OF THE NATIONAL INSTITUTE OF DENTAL AND CRANIOFACIAL RESEARCH. ELECTED TO THE NATIONAL ACADEMY OF MEDICINE IN 2002, LARRY'S MAJOR RESEARCH FOCUS HAS BEEN ON THE STRUCTURE, BIOSYNTHESIS AND FUNCTION OF GLYCOPROTEINS. HE CONTINUES HIS RESEARCH WORK IN THIS AREA, MAINTAINING AN ACTIVE LABORATORY WITHIN THE NIH INTRAMURAL PROGRAM, IN ADDITION TO HIS ADMINISTRATIVE DUTIES. HE RECEIVED HIS UNDERGRADUATE DEGREE FROM THE CITY COLLEGE OF NEW YORK, HIS DDS DEGREE FROM COLUMBIA UNIVERSITY, AND A PH.D. DEGREE FROM THE UNIVERSITY OF BUFFALO. WITHOUT FURTHER ADO, PLEASE WELCOME DR. LARRY TABAK. >>WELL, THANK YOU, DIANA, FOR THAT KIND INTRODUCTION. AND FOR INVITING ME TO TODAY'S SYMPOSIUM. I'M TRULY HONORED TO BE HERE, AND WISH NICHD A VERY HAPPY 60TH BIRTHDAY. FOR OVER 100 YEARS, NIH SCIENTISTS HAVE PAVED THE WAY FOR IMPORTANT DISCOVERIES THAT HAVE IMPROVED HEALTH AND SAVED LIVES. THEIR STUDIES HAVE LED TO THE DEVELOPMENT OF MRI, THE CREATION OF VACCINES AND TREATMENTS AGAINST INFECTIOUS DISEASES, AND TO THE CONCEPTION, IF YOU WILL, OF THE HOME PREGNANCY TEST. AMONG DOZENS OF OTHER ADVANCES. NIH-FUNDED RESEARCHERS ARE PIONEERS OF SCIENCE. THEIR DETERMINATION AND INVENTIVE SPIRIT HELP US CONFRONT AND OVERCOME THE HEALTH CHALLENGES THAT FACE OUR WORLD. NICHD IS AN IMPORTANT MEMBER OF THE NIH COMMUNITY. FROM ITS INCEPTION, NICHD HAS FOCUSED ON BIOBEHAVIORAL AND SOCIAL SCIENCE, AS WELL AS ON BIOMEDICAL RESEARCH. THE INSTITUTE HAS PRIORITIZED POPULATIONS THAT WERE OFTEN OVERLOOKED BY RESEARCHERS, AND EVEN SOCIETY. WOMEN, CHILDREN, AND PEOPLE WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES. THE FOUNDING MISSION AND FOCUS OF THE INSTITUTE SEEM PRESCIENT SIX DECADES LATER. SCIENCE IS NOW MORE MULTIDISCIPLINARY, AND WE HAVE A GREATER UNDERSTANDING OF THE LIFE-LONG CONSEQUENCES OF ENVIRONMENTAL PROCESSES AND EXPOSURES. THE COVID-19 PANDEMIC CAST A SPOTLIGHT ON HEALTH INEQUITIES AND THE IMPORTANCE OF BIOBEHAVIORAL AND SOCIAL SCIENCE RESEARCH AND THE IMPORTANCE OF INVOLVING COMMUNITIES IN THE ISSUES THAT AFFECT THEIR HEALTH. SOCIETY IS NOW MORE AWARE OF THE NEED TO ENSURE THAT ALL OF ITS MEMBERS ARE RESPECTED, VALUED, AND GIVEN THE BEST OPPORTUNITIES FOR A HEALTHY LIFE. TODAY'S YOU WILL HEAR HIGHLIGHTS FROM THE LAST 60 YEARS, BUT I WOULD LIKE TO FOCUS FOR A MOMENT ON NICHD'S RECENT HISTORY IN FACING PUBLIC HEALTH CRISES. THE INSTITUTE HAS BEEN A LEADER IN UNDERSTANDING THE EFFECTS OF COVID-19 ON PREGNANT AND POSTPARTUM WOMEN, CHILDREN AND ADOLESCENTS, AND PEOPLE WITH DISABILITIES. NIH CO-LEADS THE INITIATIVE TO REDUCE AND ADDRESS MATERNAL MORBIDITY AND MORTALITY, PARTICULARLY AMONG UNDERSERVED POPULATIONS. THE INSTITUTE ALSO LEADS EFFORTS TO STUDY THE PLACENTA NON-INVASIVELY DURING PREGNANCY, WHICH PROMISES TO YIELD NEW INSIGHTS INTO HOW THIS ORGAN INFLUENCES HEALTH AND DISEASE. THANK YOU ALL FOR ATTENDING THIS SYMPOSIUM TODAY TO CELEBRATE NICHD'S SIX DECADES OF PROMOTING HEALTHY PREGNANCIES, CHILDREN, AND LIVES. BEFORE I PASS THE MICROPHONE BACK TO DR. BE BIANCHI, I WANT O THANK HER SINCERELY FOR HER CONTINUING SUPPORT OF THE NICHD MISSION AND FOR HER STEADY LEADERSHIP IN THE FACE OF A CHANGING, CHALLENGING CIRCUMSTANCES. >>THANK YOU FOR THOSE KIND WORDS, LARRY. ONE OF NICHD'S MANY FIRSTS IS THAT WE WERE THE FIRST INSTITUTE TO BE NAMED AFTER A PERSON. ON DECEMBER 21ST, 2007, BY AN ACT OF CONGRESS, NICHD WAS RENAMED THE EUNICE KENNEDY SHRIVER NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT, IN HONOR OF MRS. SHRIVER'S VISION AND DEDICATION FOR HER CONTRIBUTIONS TO THE FOUNDING OF THE INSTITUTE. MRS. SHRIVER WAS A LIFELONG ADVOCATE FOR CHILDREN, MATERNAL HEALTH, AND ESPECIALLY PEOPLE WITH INTELLECTUAL AND A DEVELOPMENTAL DISABILITIES. SHE WAS AN ARDENT VOICE FOR THE VOICELESS AND AS A SENIOR ADVISOR TO HER BROTHER, PRESIDENT JOHN F. KENNEDY, HELPED TO MAKE NICHD A REALITY. WITHOUT HER, THE INSTITUTE WOULD NOT BE WHAT IT IS TODAY. WE'RE EXTREMELY HONORED TODAY TO HAVE REMARKS FROM EUNICE'S SON, DR. TIMOTHY SHRIVER. TIM IS THE CHAIRMAN OF THE SPECIAL OLYMPICS INTERNATIONAL AND A FORMER MEMBER OF NICHD'S ADVISORY COUNCIL. HE BEGAN HIS CAREER AS AN EDUCATOR AND SUBSEQUENTLY COFOUNDED AND CURRENTLY CHAIRS THE COLLABORATIVE FOR ACADEMIC, SOCIAL AND EMOTIONAL LEARNING, A LEADING SCHOOL REFORM ORGANIZATION IN THE FIELD OF SOCIAL AND EMOTIONAL LEARNING. TIM EARNED HIS UNDERGRADUATE DEGREE FROM YALE UNIVERSITY, A MASTER'S DEGREE FROM CATHOLIC UNIVERSITY, AND A DOCTORATE IN EDUCATION FROM THE UNIVERSITY OF CONNECTICUT. HE HAS PRODUCED SIX FILMS, AND IS THE AUTHOR OF "THE NEW YORK TIMES" BEST SELLING BOOK, "FULLY ALIVE, DISCOVERING WHAT MATTERS MOST." AND COED TOR CO-EDITOR OF A NEWE BASIS OF HOPE AND AWAKENING. PLEASE WELCOME TIM SHRIVER. THANK YOU, TIM, FOR BEING HERE WITH US. >>THANK YOU. THANK YOU SO MUCH, DR. BIANCHI. THANK YOU SO MUCH FOR WELCOMING ME AND FOR ALLOWING ME TO JOIN. THANK YOU, DR. TABAK, FOR BEING HERE AND FOR REPRESENTING THE ENTIRE NATIONAL INSTITUTES OF HEALTH ON THIS HAPPY OCCASION, THIS BIRTHDAY. I NOTICE YOUR TITLE, DR. TABAK, IS PERFORMING THE DUTIES. I WAS THINKING MYSELF, WHAT AM I PERFORMING THE DUTIES OF CHAIR OF THE SPECIAL LIMENTS MOVEMENT, I'M PERFORMING THE DUTIES OF A CITIZEN, BUT REALLY I'M PERFORMING THE DUTIES OF A SON TODAY AND I'M VERY PROUD OF PERFORMING THOSE DUTIES IN HONOR OF MY MOTHER, BUT ALSO IN HONOR OF THE WORK OF EVERYONE AT THE NICHD OVER THESE 60 YEARS WHO HAS DONE SUCH EXTRAORDINARY WORK OF DISCOVERY, OF CLINICAL TRANSLATION, OF ADVOCACY. I'VE TALKED TO DR. BIANCHI MANY TIMES ABOUT THE IMPORTANT WORK THE INSTITUTE CAN DO, INFORMING CONGRESS AND DECISION MANGERS AROUND THE COUNTRY AND AROUND THE WORLD ABOUT THE EMERGING ISSUES OF WOMEN AND CHILDREN, CHILDREN ESPECIALLY WITH DEVELOPMENTAL AND INTELLECTUAL CHALLENGES. I'M HERE TO CELEBRATE MY MOM'S ROLE AS A PARTNER TO EACH AND EVERY ONE OF YOU WHO HAVE PLAYED SUCH AN IMPORTANT ROLE IN SCIENCE AND MEDICINE AND IN THE CHANGING OF LIVES I HOPE WITH THIS QUOTE HERE, "ONE PERSON WITH A BELIEF IS EQUAL TO A FORCE OF 99 WHO HAVE ONLY INTERESTS." SO MY MOM, PICTURED HERE TOWARDS THE END OF HER LIFE BUT STILL VIBRANT, AS I HOPE YOU CAN TELL, REALLY HAD ONE BELIEF, AND IT WAS THE BELIEF IN THE DIGNITY OF EVERY HUMAN BEING. THAT DIGNITY WAS NOT APPORTIONED ACCORDING TO A FORMULA, DIGNITY WAS NOT ACCORDED, ACCORDING TO SOME HIERARCHY, SOME ACHIEVEMENT RATIO, SOME WEALTH OR FAME OR POWER INDICATOR. IT WAS EQUAL IN EVERYONE, AND THAT SINGULAR BELIEF ANIMATED HER GOAL. HER WHOLE LIFE'S WORK, WHICH WAS TO PROVE WHAT SHE SO OFTEN FELT WAS THE MISTAKE THAT CULTURES AND SOCIETIES AND POLITICAL INSTITUTIONS MAKE IN NOT SEEING THE DIGNITY OF THOSE WHO SEEM TO BE IN SOME WAYS VULNERABLE AROUND THE MARGINS OF SOCIETY. ON THE NEXT SLIDE, I'M NOT SURE -- I CAN'T REMEMBER WHETHER I'M OPERATING THESE SLIDES OR NOT BUT MAYBE I AM, I CAN'T REMEMBER. LET'S SEE. NO, I GUESS I'M NOT. MAYBE SOMEONE -- THERE WE GO. THE NEXT SLIDE IS A PICTURE OF MY MOM AND HER BROTHERS AND SISTERS AND PARENTS. THIS IS A PICTURE THAT'S UNREMARKABLE IN MANY WAYS, REMARKABLE IN A FEW. FOR THOSE OF YOU WHO GRAVITATE THEIR EYE LINE WILL GO TO THE MEN IN THIS PICTURE, PRINCIPALLY TO PRESIDENT KENNEDY, FUTURE PRESIDENT KENNEDY IS THE SECOND FROM THE LEFT. TO MY UNCLE ROBERT FRANCIS KENNEDY, WHO'S THE SECOND FROM THE RIGHT, TO SENATOR EDWARD M. KENNEDY, THE LITTLE FELLA IN THE MIDDLE BETWEEN HIS MOM AND HIS DAD. A FEW WILL NOTICE THE WOMEN, SADLY. AND STILL FEWER WILL NOTICE THE WOMAN WHO IS STANDING TO THE LEFT OF PRESIDENT KENNEDY. THAT'S MY AUNT ROSEMARY KENNEDY, AND THROUGHOUT HER LIFE, WAS DIAGNOSED WITH AND LIVED WITH AN INTELLECTUAL DISABILITY. I CALL IT AN UNREMARKABLE PICTURE IN SOME WAYS BUT A REMARKABLE PICTURE IN OTHERS. THE NUMBER OF AMERICAN FAMILIES WHO WHEN THIS PICTURE WAS TAKEN WHO WOULD HAVE THEIR PICTURE TAKEN WITH A CHILD WITH AN INTELLECTUAL DISABILITY IS SMALL. THE NUMBER OF FAMILIES WHO WERE TOLD AT BIRTH, AS MY GRANDPARENTS WERE TOLD, TO GIVE UP THEIR CHILD WITH AN INTELLECTUAL DISABILITY AND PLACE THAT CHILD IN AN INSTITUTION, TO FORGET THAT CHILD, TO LEAVE THE LABOR AND DELIVERY ROOM AS THOUGH NOTHING HAD HAPPENED AND RESUME THEIR LIVES WITHOUT CAUSE OR PAUSE TO THE CHILD WHO HAD JUST BEEN BORN, THE NUMBER OF FAMILIES SKYROCKETED THROUGHOUT THE 20TH CENTURY. YOU'LL SEE IN THE NEXT FO PHOTOGRAPH, IF WE CAN CONTINUE HERE, A PICTURE OF MY MOTHER AND HER SISTER. THIS RELATIONSHIP SHAPED MY MOTHER THROUGHOUT HER LIFE. SHE SAW IN HER SISTER A FRIEND, AN ALLY, A PERSON WHO LIKED TO GO OUT, A PERSON WHO LIKED TO TELL JOKES, A PERSON WHO, YES, SOMETIMES STRUGGLED, WAS FREQUENTLY DENIED ACCESS TO SCHOOL, ALMOST NEVER FOUND A PLACE IN LIFE OUTSIDE OF HER OWN FAMILY, BUT TO MY MOM, SHE WAS HER SISTER. AND MY MOM'S LIFE WAS DEDICATED TO PROVING THE WORLD WAS WRONG ABOUT HER SISTER. THAT WHAT SHE SAW IN HER SISTER AND WHAT THE WORLD SAW IN HER SISTER WERE WILDLY DIVERGENT, AND THAT HER VISION, THE VISION SHE SAW OF A GIFTED, IMPORTANT, POWERFUL, LOVEABLE, LOVING SISTER WAS THE VISION THE WORLD OUGHT TO SEE. IT'S NOT THE VISION THE WORLD SAW. IN THE NEXT SLIDE, YOU'LL SEE WHAT SO MANY OF YOU WILL KNOW ABOUT, THAT YOU'LL SEE A QUOTE FROM MY MOTHER UPON VISITING THE INSTITUTIONS, THAT WERE I'M SORRY TO SAY WERE LARGELY THE RESULT OF CONSENSUS BETWEEN MEDICINE AND CULTURE THAT DISMISSED THESE FOLKS WHO HAVE AN INTELLECTUAL AND DEVELOPMENTAL DISABILITY AND RELEGATED THEM TO A LIFETIME OF IMPRISONMENT. HOWEVER THE DECISION BROUGHT THE LEGAL -- THE POLITICAL AND MEDICAL APPARATUS FORCING THE STERILIZATION OF TENS OF THOUSANDS OF WOMEN INSTITUTIONALIZED IN THESE CENTERS AND MY MOTHER LATER IN HER LIFE, IN THE 40s AND 50s, RECALLED THESE XEN SCENES S BLEAK AND OVERCROWDED, UNLOVED, UNWANTED DEAD-END STREETS. FOR HUMAN BEINGS. AND I'M SORRY TO SAY, IT WAS EXACTLY THIS CONTEXT IN WHICH OUR INSTITUTE, THE INSTITUTE WE CELEBRATE TODAY WAS BORN. ON THE NEXT SLIDE, YOU'LL SEE THE STATUS OF POLITICAL AND SOCIAL WILL IN THE 1950s, ELIZABETH BOGGS WROTE, THEY PRIVATELY DOUBTED AT THE NATIONAL INSTITUTE OF MENTAL HEALTH WHETHER $250,000 COULD BE SPENT. AND THE FEDERAL GOVERNMENT'S ROLE IN INTELLECTUAL DISABILITY WAS SO SMALL THAT THE QUITE SMALL KENNEDY FOUNDATION ESTABLISHED BY MY GRANDFATHER SURPASSED HIGHER INFRASTRUCTURE OF THE FEDERAL GOVERNMENT IN A SINGLE GIFT. SO THERE WAS NEXT TO NOTHING, IMAGINE BEING A MOM OR A DAD, KNOCKING ON THE DOOR. IS THERE SOMEONE, IS THERE ANYONE? THAT GLORIOUS HISTORY WE JUST HEARD OF THIS INSTITUTE WOULD HAVE BEEN COMPLETELY UNIMAGINABLE TO A MOM OR A DAD IN THE 1940s OR 50s, OR EVEN 60s. ON THE NEXT SLIDE, YOU'LL SEE A BRIEF MENTION OF DR. JAMES SHANNON. I DON'T PUT HIM HERE TO STICK HIM OUT AT DR. TABAK'S PREDECESSOR BUT TO REMIND HIM OF WHAT WE SAW, THIS IS ALL OF US, THERE AREN'T ANY MAJOR PROBLEMS IN CHILDREN. NEXT SLIDE. SO WHEN PRESIDENT KENNEDY WAS ELECTED ABOUT THREE MILES FROM WHERE THE NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT SITS TODAY, MY MOM STARTED A SUMMER CAMP, AND IN THESE PICTURES, YOU CAN SEE MY MOM'S FAVORITE ROLE IN LIFE, WHICH WAS TO TEACH SWIMMING. 1962, CHILDREN FROM INSTITUTIONS CAME UP ROCKVILLE PIKE, PAST THE NIH AND PULLED THEM TO EDSON LANE WHERE WE WERE VERY BLESSED TO HAVE SEVERAL ACRE, MY MOM CONVERTED IT INTO A SUMMER CAMP. NOT TO BE VAIN, BUT WHERE THE FLAG IS BEING RAISED THERE, YOURS TRULY, JUST TO PROVE I WASN'T COMPLETELY MISSING FROM THE NARRATIVE. BUT IT'S IMPORTANT TO NOTE THAT MY MOM MADE ME INTO A CAMPER AT THE AGE OF 4. SO THAT I WOULD GROW UP LEARNING TO PLAY WITH MY PEERS WITH INTELLECTUAL OR DEVELOPMENTAL CHALLENGE, SEAMLESSLY, HAPPILY U KNOW, EXCITEDLY. I LOOKED FORWARD TO CAMP. THERE WAS NO STIGMA, YET, IN THAT TIME. AND THERE WAS THIS GREAT EXPERIMENT, I WOULD SAY, ALMOST AN EXPERIMENT IN HUMAN POSSIBILITY GOING ON, RIGHT THERE, A STONE'S THROW FROM THE INSTITUTES TODAY. ON THE NEXT SLIDE, YOU'LL SEE WHAT THAT EXPERIMENT MEANT WHEN IT CAME TO MY MOM'S DEALING WITH THE PRESIDENT OF THE UNITED STATES. SO YOU CAN SEE THAT THE PRESIDENT'S PANEL CONVENED IN 1962, REPORTED IN ONE SHORT MONTH, DR. BIANCHI -- EXCUSE ME, ONE SHORT YEAR, IT TOOK, FOR THE REPORT, SCANNING THE LANDSCAPE OF WORK BEING DONE AROUND THE WORLD, THE URGENCY OF A FEDERAL PROGRAM OF ACTION IN THE FIELD OF INTELLECTUAL DEVELOPMENTAL DISABILITY. NICHD'S CREATION WAS PART OF THAT ACTION, THE MATERNAL AND CHILD HEALTH ACT, THE MENTAL RETARDATION FACILITIES AND COMMUNITY MENTAL HEALTH CENTERS CONSTRUCTION ACT, THE MENTAL RETARDATION RESEARCH CENTERS, THE UNIVERSITY AFFILIATED CENTERS, NOW THE UCEDDs TODAY, THERE'S 67, STILL FUNDED, STILL SUPPORTED BY THE ENTERPRISE AT BOTH THE INSTITUTES AND OTHER PARTS OF THE FEDERAL GOVERNMENT, CREATING A NATIONWIDE COMMITMENT TO HUMAN POSSIBILITY. NOT JUST TO CURES, NOT JUST TO THE ADVANCEMENT OF SCIENCE BUT TO THE ADVANCEMENT OF SCIENCE AND SERVICE, TO THE DIGNITY AND POSSIBILITY OF EVERY CHILD. NO EXCEPTIONS, NO HIERARCHIES, NOBODY EXCLUDED. I DON'T MEAN TO CLAIM ALL THIS FOR MY MOM BUT I DO MEAN TO SUGGEST THAT ONE PERSON'S BELIEF CAN START TO TRIGGER AND CATALYZE ACTION ACROSS A WHOLE RANGE OF POSSIBILITIES. WE'LL CONTINUE HERE AND ALLOW ME JUST TO GO THROUGH A LITTLE BIT THE EXCITEMENT THAT MY MOM GENERATED OUTSIDE THE WALLS ON THE NEXT SLIDE OF NICHD. YOU'LL SEE A PICTURE OF THE 1968 CHICAGO SOLDIER FIELD. THIS IS THE FIRST OLYMPICS GAMES WHERE MY MOM IS READING THE OATH OF THE SPECIAL OLYMPICS MOVEMENT: LET ME WIN BUT IF I CANNOT WIN, LET ME BE BRAVE IN THE ATTEMPT. ON THE NEXT SLIDE, YOU'LL SEE WHAT BRAVERY LOOKS LIKE. IF WE CAN GO TO THE NEXT SLIDE, YOU'LL SEE ONE SINGULAR SCENE HERE, 100,000 SEATS, 99,000 EMPTY ONES. YOU GO FOR IT, REGARDLESS, REGARDLESS. PEOPLE DIDN'T PAY ATTENTION, YOU GO FOR IT. PEOPLE DON'T SEE WHAT YOU SEE, THEY DON'T SEE MOST OF THE COMPETITORS ON THIS FIELD WERE LICENSED AND AUTHORIZED TO LEAVE STATE INSTITUTIONS BY FEDERAL AUTHORITY, STATE AUTHORITIES AND LEGAL AUTHORITIES. NEEDING PERMISSION TO GO TO CHICAGO'S SOLDIER FIELD TO RUN 100 METERS, BECAUSE THEY WERE COMING AS WARDS OF THE STATE. ON THE BOTTOM LEFT, I WON'T GO INTO A LOT OF DETAIL, YOU'LL SEE A LOT OF PEOPLE SITTING ON THE SIDE OF A MAKESHIFT POOL. THAT'S BECAUSE THE POOL HAD LIFEGUARDS, THINKING CHILDREN WOULD DROWN IF THERE WEREN'T LIFEGUARD EVERY 3 TO 4 FEET. I KNOW I'M ABOUT TO RUN OUT OF TIME BUT THIS IS PHOTOGRAPHS FROM THE HISTORY OF THE SPECIAL OLYMPICS MOVEMENT. THIS IS AJAR ACILLA ON THE WINNER'S STAND. IN THIS POSE THAT JUST, TO ME, SUGGESTS A CERTAIN SENSE OF DIGNITY, TRIUMPH, BELIEF, HAPPINESS MAYBE EVEN, PRIDE, AND SHE CAME IN SEVENTH. MOST OF US DON'T HAVE THIS KIND OF PICTURE IN OUR HOUSE. WE DON'T CELEBRATE OUR SEVENTH PLACE FINISHES, BUT AJARA, TOGETHER WITH THE SIX OR SO MILLION ATHLETES AROUND THE WORLD OF SPECIAL OLYMPICS SOMEHOW IS REMINDING US OF THIS FUNDAMENTAL BELIEF, THAT WHEN YOU DO YOUR BEST, YOU HAVE WON. THE SPECIAL OLYMPICS MOVEMENT IS ESTABLISHED NOT TO FIND THE BEST, BUT TO ENABLE EVERYONE TO DO THEIR BEST. AND IN THE COMPETITION TO DO YOUR BEST, EVERYONE CAN WIN. AND WHEN THOSE OF US AMONG US WHO STRUGGLED WITH THE GREATEST ODDS DO THEIR BEST, IT IS AN ICONIC MOMENT IN HUMAN EXPERIENCE, IN MY VIEW. WE'LL CONTINUE ON HERE AND I'LL START TO WRAP UP WITH A FEW STATEMENTS THAT REMIND US THAT -- DR. BIANCHI ALLUDED TO SOME OF THE STRUGGLES STILL IN FRONT OF US. CHILDREN DO SUFFER FROM THE HEALTH INEQUITIES, DR. TABAK SAID THE SAME, SEVEN TIMES HIGHER MORTALITY RATE, SIX TIMES MORE LIKELY -- THE DATA ON LIFE EXPECTANCY SHOULD SHOCK US. NOT AS A FUNCTION OF A PRIMARY DIAGNOSIS, BUT AS A FUNCTION OF NEGLECT WITHIN OUR SOCIAL AND CULTURAL AND POLITICAL SYSTEMS. THIS IS THE MANDATE OF THIS INSTITUTE. I KNOW ITS LIFECYCLE AND I KNOW, MY GOODNESS, I'VE HEARD ON KOWRNTION I WAS R -- ONCOUNCIL,E INSTITUTE OF INTELLECTUAL DISABILITIES BUT IT HAS TO BE AT LEAST IN PART THAT. IT MUST BE IF IT WILL REPRESENT THE FULL CYCLE OF HUMAN EXPERIENCE. NO OTHER INSTITUTE OWNS THIS MANDATE. IT WAS A SACRED TRUST THAT THE COUNTRY HAS PLACED IN THE SCIENTISTS IN NICHD TO DO RESEARCH ON BEHALF OF AND DO CLINICAL TRANSLATION SUPPORT SERVICE ON BEHALF OF THIS POPULATION. WE'LL GO TO THE NEXT SLIDE. WE ARE STILL RECOGNIZING THE LACK OF PREVENTIVE CARE. I'M GOING TO RUN OUT OF TIME SO I'M GOING TO GO TO THE NEXT SLIDE. THIS IS DATA ESPECIALLY DR. TABAK YOU WILL KNOW ON DENTAL PROBLEMS IN THIS POPULATION. THEY'RE ENORMOUS, SCANDALOUS, I DARE SAY. THE NEGLECT THAT OUR BROTHERS AND SISTERS WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES FACE IN THE SYSTEM. BUT WE DON'T HAVE THE CARE, WE DON'T HAVE THE DATA, WE DON'T HAVE THE CAPACITY TO UNDERSTAND THE LIFE COURSE OF SO MANY OF THESE CHILDREN. I KNOW WE'RE MAKING PROGRESS ON THESE THINGS. THE NATIONAL CHILDREN'S STUDY -- BUT THE WORK IS URGENT. IT LIFE AND DEATH FOR THIS POPULATION. UNSEEN OFTEN, UNNOTICED MANY TIMES, BUT LIFE AND DEATH AND THEREFORE A MANDATE TO ALL OF US. ON THE NEXT SLIDE, WE'LL START TO WRAP UP, WITH JUST A LITTLE BIT OF INSPIRATION, I THINK WE HAVE A NEW GENERATION IN FRONT OF US. THIS IS THE WORK THAT SPECIAL OLYMPICS DOES TO EDUCATE YOUNG PEOPLE. WITHOUT INTELLECTUAL DISABILITIES. WITH EMPATHY AND PERSPECTIVE-TAKING AND COURAGEOUS ACTION AND UNIVERSAL DIGNITY TO PROMOTE A CULTURE OF INCLUSION. ON THE NEXT SLIDE, YOU'LL SEE THE WORDS THESE YOUNG PEOPLE WRITE WHEN THEY ARE ASKED TO SAY WHAT SHOULD OUR SCHOOL MESSAGE BE, AND THIS IS THE YOUNG PEOPLE OF A SCHOOL IN RHODE ISLAND. "I PLEDGE TO LOOK FOR THE LONELY, THE ISOLATED, THE LEFT OUT, AND THE CHALLENGED AND THE BULLIED. HOW PROUD MY MOTHER WOULD BE OF THIS NEXT GENERATION AND I HOPE ALL OF US WOULD BE. ON THE LAST SLIDE, LET ME JUST THANK ALL OF YOU. THIS IS A PICTURE ON THE RIGHT OF DONAL PAIGE, AN ATHLETE IN IRELAND WITH WHAT WE MIGHT CALL SEVERE OR EVEN PROFOUND INTELLECTUAL DISABILITY AFTER HE WON HIS MEDAL IN THE BEANBAG LIFT. A CHAMPION FOR HIS FAMILY, HIS COMMUNITY, HIS COUNTRY. EVERYONE CAN HAVE THIS SAME, I HOPE, BELIEF. NOT JUST INTERESTS, BUT BELIEFS. AND WITH THESE BELIEFS, THE CENTER, THE INSTITUTE ITSELF AND THE RELATED INSTITUTES WILL CONTINUE TO MAKE A LIFE CHANGING DIFFERENCE. THANK YOU ALL VERY MUCH. >>PLEASE ENJOY THE FOLLOWING VIDEOS HIGHLIGHTING NICHD'S MISSION STATEMENT AND THE WORK OF THE HUMAN PLACENTA PROJECT. WE ALSO HAVE A SPECIAL MESSAGE FROM CONGRESSWOMAN LAUREN UNDERWOOD. >>THE MISSION OF THE NICHD -- >>THE MISSION OF THE NICHD -- >>OUR REAL MISSION IS RESEARCH AND TRAINING. >>THE MISSION OF NICHD IS TO -- I FORGOT. >>I KNOW THERE'S A PART IN THERE ABOUT WOMEN. >>THE MISSION OF NICHD IS THAT A PRN IS B PERSON IS BORN HEALTD WANTED. >>THAT WOMEN ARE FREE FROM THE ILL EFFECTS OF REPRODUCTIVE PROCESSES. >>HARMFUL EFFECTS OF THE REPRODUCTIVE PROCESSES. >>ANY ADVERSE CONSEQUENCES OF REPRODUCTIVE PROCESSES. >>NO NEGATIVE REPERCUSSIONS OF REPRODUCTION? >>THAT EVERYONE ACHIEVES THEIR FULL POTENTIAL. >>AND THAT ALL CHILDREN WILL HAVE AN EQUAL OPPORTUNITY. >>THAT ALL CHILDREN ARE GIVEN THE POTENTIAL TO LIVE HEALTHY, PRODUCTIVE, INDEPENDENT LIVES. >>FREE FROM -- >>FREE OF DISEASES AND DISABILITY. >>AND THERE WAS MORE -- THE THIRD PART HAS SOMETHING TO DO WITH REHABILITATION. >>SOMETHING ABOUT OPTIMAL REHABILITATION. >>REHABILITATION IS PRETTY MUCH THE MOST IMPORTANT THING HERE. >>WE ARE VERY COMMITTED TO REHABILITATION, BUT I CAN NEVER REMEMBER THAT PART. >>IN ADDITION, THE MISSION IS TO MAKE SURE THAT EVERY PERSON LIVES PRODUCTIVELY, HEALTHY THROUGH OPTIMAL REHABILITATION. >>THROUGH OPTIMAL REHABILITATION. >>THROUGH OPTIMAL REHABILITATION. >>THAT'S IT! >>THE PLACENTA IS THE RODNEY DANGERFIELD OF ORGANS. IT REALLY GETS NO RESPECT. MOST PEOPLE DON'T KNOW WHAT THE PLACENTA IS UNLESS THEY HAVE ACTUALLY SEEN ONE. AND THEY REALLY DON'T APPRECIATE ITS MANY, MANY FUNCTIONS. AND ITS ESSENTIAL NATURE TO A HEALTHY LONG-TERM LIFE. >>WHEN YOU STUDY MAGIC, WHEN YOU LEARN HOW A TRICK IS DONE YOU'RE LIKE THAT'S COOL, CLEVER. THE PLACENTA, THE MORE YOU LEARN ABOUT IT, THE MORE INCREDIBLE IT IS. IT'S LIKE EACH LAYER OF INSIGHT THAT WE GET MAKES IT AN EVEN MORE REMARKABLE STRUCTURE TO STUDY. RIGHT NOW, UNFORTUNATELY, THE WAY WE CAN TELL WHEN THERE'S A PROBLEM WITH A PREGNANCY IS WHEN YOU SEE LATE-STAGE DAMAGE. >>WHAT YOU WANT IS THE INFORMATION WHEN YOU CAN INTERVENE, AND IF YOU HAVE A SIGN THAT THE PLACENTA IS NOT HEALTHY, PERHAPS YOU CAN CHANGE MANAGEMENT OR CHANGE TREATMENT TO IMPROVE OUTCOME. >>SO WE TAKE MR IMAGES, SEGMENT THEM BY HAND AND PRINT ON A 3D PRINTER ALL THE DIFFERENT PARTS AND WE FILL UP DIFFERENT CAVITIES WITH DIFFERENT MATERIALS TO MIMIC THOSE OF THE BODY. >>I HOPE WE'LL BE ABLE TO HAVE METRICS OF PLACENTA HEALTH TO ASSESS HOW WELL IT SERVING THE FETUS. >>I THINK THIS COULD REALLY TRANSFORM HOW WE MONITOR PREGNANCIES. WHEN YOU HAVE THE LEADERSHIP SAYING THIS IS OUR PRIORITY, IT MOBILIZES PEOPLE, IT UNITES THEM, IT CAUSES PEOPLE TO START WORKING TOGETHER AS A TEAM. THERE'S NO QUESTION YOU GET DEGREES OF SYNERGY THAT ARE JUST OTHERWISE IMPOSSIBLE. >>HI, EVERYBODY. I'M CONGRESSWOMAN LAUREN UNDERWOOD, AND I HAVE THE HONOR OF REPRESENTING ILLINOIS' 14TH CONGRESSIONAL DISTRICT. I WOULD LIKE TO THANK DR. DIANA BIANCHI FOR THE INVITATION TO JOIN TODAY'S SYMPOSIUM AND FOR HER TREMENDOUS LEADERSHIP AT THE EUNICE KENNEDY SHRIVER NATIONAL INSTITUTE OF CHILD HEALTH AND DEVELOPMENT AND TO ALL THE RESEARCHERS, SCIENTISTS AND STAFF AT NICHD. CONGRATULATIONS ON 60 YEARS OF EXCELLENCE IN SCIENTIFIC ENDEAVORS TO UNDERSTAND HUMAN DEVELOPMENT, IMPROVE REPRODUCTIVE HEALTH, ENHANCE THE LIVES OF CHILDREN AND ADOLESCENTS AND OPTIMIZE ABILITIES FOR ALL. YOUR WORK HAS SAVED LIVES, SUPPORTED FAMILIES AND STRENGTHENED OPPORTUNITIES ACROSS THE COUNTRY AND AROUND THE WORLD. TO EVERYONE WHO HAS CONTRIBUTED TO THIS RICH HISTORY, I WANT TO SAY THANK YOU. I AM SO PROUD TO BE A CHAMPION IN CONGRESS TO SUPPORT YOUR CRITICAL MISSION. AS A MEMBER OF THE HOUSE COMMITTEE ON APPROPRIATIONS, ONE OF MY HIGHEST PRIORITIES HAS BEEN TO SECURE ROBUST AND SUSTAINED FUNDING FOR OUR NATION'S BIOMEDICAL RESEARCH INFRASTRUCTURE AT NIH, PARTICULARLY TO SUPPORT YOUR WORK AT NICHD. AND AS A CO-FOUNDER AND CO-CHAIR OF THE BLACK MATERNAL HEALTH CAUCUS IN CONGRESS, I HAVE SEEN JUST HOW IMPORTANT THAT WORK IS. AS YOU KNOW, THE UNITED STATES HAS THE HIGHEST MATERNAL MORTALITY RATE OF ANY HIGH INCOME COUNTRY OF THE WORLD AND THE MAJORITY OF THESE DEATHS ARE PREVENTABLE. WE ALSO SEE SIGNIFICANT RACIAL AND ETHNIC DISPARITIES AND MATERNAL HEALTH OUTCOMES AND UNACCEPTABLE REALITY THAT DEMANDS A BOLD, DATA-DRIVEN, EVIDENCE-BASED POLICY RESPONSE. TO DO THAT, WE NEED DATA TO UNDERSTAND THE CAUSES OF ADVERSE OUTCOMES, AND WE NEED EVIDENCE ON THE EFFECTIVENESS OF INTERVENTIONS TO SAVE LIVES AND ADVANCE BIRTH EQUITY. NOW THAT'S WHERE YOU COME IN. THE RESEARCH THAT NICHD HAS LED FOR THE PAST SIX DECADES HAS INFORMED THE INITIATIVES THAT WE HAVE LED WITH THE BLACK MATERNAL HEALTH CAUCUS TO TACKLE THIS CRISIS. WHEN NIH LAUNCHED THE IMPROVE INITIATIVE SPEARHEADED BY NICHD, IT SUPPORTS RESEARCH FOCUS ON ROW DUESING PREVENTABLE CAUSES OF PREGNANCY-RELATED DEATHS, IMPROVING PERINATAL HEALTH AND ELIMINATING DISPARITIES IN MATERNAL HEALTH OUTCOMES FOR BLACK, NATIVE, HISPANIC AND AAPI PEOPLE AS WELL AS THOSE WITH ELEVATED RATES OF MATERNAL MORTALITY. IT WAS BORN OUT OF A CONVERSATION THAT DR. BIANCHI AND I HAD SHORTLY AFTER I WAS FIRST SWORN INTO CONGRESS. AND THE IDEA CONTINUED TO GROW AFTER DR. BIANCHI JOINED OTHER NIH DIRECTORS AND DR. FRANCIS COLLINS AT A BIPARTISAN MEETING WITH THE BLACK MATERNAL HEALTH CAUCUS IN 2019. FROM THERE, THE IMPROVE INITIATIVES RESEARCH AGENDA WAS DEVELOPED AND IMPLEMENTED AND IN THE YEARS SINCE, THIS RESEARCH HAS EXPANDED SIGNIFICANTLY, ACCELERATED IN THE CURRENT FISCAL YEAR BY THE FIRST EVER DIRECT APPROPRIATION FOR IMPROVED AN UNPRECEDENTED $30 MILLION INVESTMENT IN MATERNAL HEALTH RESEARCH. IN APRIL 2022, I INTRODUCED THE BIPARTISAN NIH IMPROVE ACT TO MAINTAIN THE STRONG FUNDING LEVEL YEAR AFTER YEAR ENSURING THAT YOUR TEAM HAS THE RESOURCES YOU NEED TO CONTINUE TO CARRY OUT THIS URGENT WORK. THE NIH IMPROVE ACT COMPLEMENTS THE BLACK MATERNAL HEALTH ACT, A SWEEPING SET OF BILLS THAT I INTRODUCED TO BUILD ON EXISTING LEGISLATION AND COMPREHENSIVELY ADDRESS EVERY DRIVER OF MATERNAL MORTALITY, MORBIDITY AND DISPARITIES. THE INVESTMENTS WILL GROW AND DIVERSIFY THE PERINATAL WORKFORCE, ADDRESS COMMUNITY-BASED ORGANIZATIONS, EXPAND ACCESS TO DIGITAL TOOLS AND IMPROVE CARE FOR PEOPLE WITH MATERNAL MENTAL HEALTH CONDITIONS AND SUBSTANCE USE DISORDERS. THESE EVIDENCE-BASED PROGRAMS AND OTHERS THROUGHOUT ARE BASED ON FINDINGS FROM THE RESEARCH THAT YOU CARRY OUT AND FUND AT NICHD. TOGETHER, WE ARE DOING THE WORK THAT IS REQUIRED TO PREVENT MATERNAL DEATH AND DISPARITIES, AND TO MAKE THE UNITED STATES THE SAFEST COUNTRY IN THE WORLD TO GIVE BIRTH. THANK YOU FOR YOUR COMMITMENT TO THIS CAUSE. AND FOR THE HONOR OF JOINING YOU AT TODAY'S SYMPOSIUM. HERE'S TO 60 YEARS OF INSPIRING, IMPACTFUL, LIFE-SAVING WORK, AND MANY YEARS TO COME. I LOOK FORWARD TO SEEING YOU AGAIN SOON, BUT UNTIL THEN, TAKE GOOD CARE OF YOURSELVES. >>LET'S MOVE INTO OUR FIRST SESSION OF THE DAY. PROMOTING HEALTHY PREGNANCIES, MODERATED BY DR. CAROLINE SIGNORE. DEPUTY DIRECTOR OF THE NICHD DIVISION OF EXTRAMURAL RESEARCH. >>GOOD MORNING, ALL, AND WELCOME! I'M SO EXCITED TO KICK OFF THIS SYMPOSIUM WITH THE PROMOTING HEALTHY PREGNANCIES SYMPOSIUM. LET'S JUST GET RIGHT INTO IT. OUR FIRST SPEAKER TODAY IS DR. ALFRED ABUHAMAD. HE CURRENTLY SERVES AS INTERIM PRESIDENT, PROVOST AND DEAN AND PROFESSOR OF OBSTETRICS AND GYNECOLOGY AND RADIOLOGY AT EASTERN PERDUE MEDICAL SCHOOL, WHERE HE HAS BEEN ON FACULTY FOR 29 YEARS. HE IS PAST PRESIDENT OF THE SOCIETY FOR MATERNAL FETAL MEDICINE, THE PERINATAL QUALITY FORUM AND THE AMERICAN INSTITUTE OF ULTRASOUND IN MEDICINE. HE IS WELL-KNOWN FOR HIS WORK IN ULTRASOUND, PRENATAL DIAGNOSIS, FETAL EPICARDIOGRAPHY, GLOBAL OUTREACH AND PATIENT SAFETY. PLEASE JOIN ME IN WELCOMING DR. ABUHAMAD. >>THANK YOU, CAROLINE, FOR THIS KIND INTRODUCTION. I WOULD LIKE TO TAKE THIS OPPORTUNITY TO THANK DR. BIANCHI FOR IB VITALLING ME TO SPEAK AND SHARE SOME OF OUR RESEARCH, AND CERTAINLY FOR THE NICHD FOR THEIR SUPPORT OVER TIME. MY TALK IS ON ULTRASOUND INNOVATION AND PLACENTAL EVALUATION. AS DISCLOSURES, I'M RECIPIENT OF THE NICHD GRANT FOR THE STUDY OF THE HUMAN PLACENTA USING ULTRASOUND. I'M ALSO ON THE ADVISORY BOARD OF SONOSIM, TRICE IMAGING AND MORE. THERE'S A LOT OF EVIDENCE ACCUMULATING TO SUGGEST THAT ALTERATIONS IN PLACENTAL MICROVASCULAR DEVELOPMENT EARLY ON IN PREGNANCY LEADS TO -- AT LEAST IN PART TO SOME PREGNANCY COMPLICATIONS THAT HAPPENS LATER ON, SUCH AS PREECLAMPSIA, FETAL GROWTH RESTRICTION, PRETERM LABOR, STILLBIRTH AND NEONATAL MORBIDITY. AND THIS LACK OF ADAPTATION IS RESULTANT FROM THE LOSS OF THE INNOVATION OF THE CYTOTROPHOBLASTS STARTING FROM THE FIRST TRIMESTER INTO THE SECOND TRIMESTER THAT MAKES THE SPIRAL ARTERY VESSELS MAXIMALLY DILATED TO REDUCE IMPEDANCE OF FLOW AND, AS IMPORTANT, REDUCING THE PEAK VELOCITY OF FLOW TO PROTECT THE MICRO ARCHITECTURE OF THE DEVELOPING PLACENTA EARLY ON. WE ALSO KNOW THAT IN COMPLICATED PREGNANCIES, LOOKING AT THE SPECIMEN, TYPICALLY YOU SEE INCREASE IN PLACENTAL INFARCTION, VILLUS DENSITY ARRANGEMENTS, AND CALCIUM CONTENT AND FIBROSIS THAT LEADS TO THE ALTERATIONS IN PLACENTAL TISSUE STRUCTURE ITSELF. AND WE KNOW THAT ALTERATIONS IN PLACENTAL TISSUE STRUCTURE CAN POTENTIALLY LEAD TO CHANGES IN ACOUSTIC PROPERTIES OF PLACENTAL TISSUE THAT COULD BE -- ULTRASOUND TECHNIQUES. SO -- AND ALSO THERE'S ACCUMULATING EVIDENCE THAT SHOWS THAT PLACENTAL DYSFUNCTION THAT LEADS TO THESE LONG-TERM COMPLICATIONS, AT LEAST IN PART HAVE ITS ORIGIN IN EARLY GESTATION. NOW, ULTRASOUND, AT LEAST WE BELIEVE, IS ONE OF THE MOST OPTIMAL IMAGING MODALITIES FOR PLACENTAL EVALUATION, ESPECIALLY IN EARLY GESTATION, AND IT IS WELL ADAPTED TO BE USED FOR THAT CAUSE. IT IS NONINVASIVE, IT'S DONE IN REALTIME AND WE HAVE THE ABILITY TO QUANTITATE THE FLOW. IT'S WIDELY AVAILABLE AND PORTABLE TO THE PATIENT, RELATIVELY LOW COST, RELATIVELY SAFE WITH NO IONIZING RADIATION, AND YOU CAN START EYE PLIED FROM EARLY PREG SOOND' IT'S ALREADY INCORPORATED IN CLINICAL CARE. NOW ULTRASOUND IS CONTINUOUSLY EVOLVING OVER TIME, AND THERE ARE NOVEL TOOLS THAT ARE AVAILABLE TODAY ON A LOT OF HIGH-END ULTRASOUND SYSTEMS THAT COULD BE ADAPTED TO PLACENTAL EVALUATION EARLY IN PREGNANCY. NOW, JUST LOOKING AT WHERE IS ULTRASOUND TODAY, YOU CAN SEE THAT IT HAS CHANGED SUBSTANTIALLY, EVEN OVER THE PAST 10 TO 15 YEARS. WE CAN SEE AT 26 WEEKS LOOKING AT BRAIN ANATOMY IN GREAT DETAILS, LOOKING AT THE MICRO VASCULATURE, AT 18 WEEKS LOOKING AT THE VENOUS SYSTEM COMING TO THE LEFT ATRIUM FROM THE PULMONARY VENOUS SYSTEM, AND YOU CAN SEE AT 23 WEEKS HERE A DILATED KIDNEY SHOWING THE RENAL PELVIS AND DILATED URETER. VASCULATURE IN THE FETAL BRAIN AT 20 WEEKS AND 13 WEEKS. AND ALSO WE HAD THE ABILITY TO ACQUIRE VOLUME. THIS IS AT 13 WEEKS PLACENTA AND 3D ACQUIRED FROM ONE OF OUR STUDY SUBJECTS OF PREGNANCY. SO THE NOVEL ULTRASOUND TOOLS NOW ALLOW US TO LOOK AT THE PLACENTAL MICRO VASCULATURE LOOKING AT THE MATERNAL SIDE OF THE PLA 16 TA PLACENTA AND WE CN QUANTITATE THE FLOW USING SEC PRAL DOPPLER TECHNIQUES. WE CAN ALSO ASSESS THE TISSUE DENSITY BY USING SHEER WAVE, THAT PULSE AS IT TRAVERSES THE TISSUE CAN INCREASE IN SPEED BASED ON THE DENSITY OF THE TISSUE. AND USING THE VELOCITY OF THE SPEED OF THE PULSE, YOU CAN ACTUALLY DETERMINE THE SHEER WEIGHT OR DENSITY OF PLACENTAL TISSUE, MATERNAL LIVER AND ADULT LIVER IN CASES OF FIBROSIS. HERE YOU SEE ON THE LEFT SIDE ANTERIOR PLACENTA AT 13 WEEKS AND ON THE RIGHT SIDE THE POST TORE PLACENTA ALSO. WE CAN ALSO USE SOPHISTICATED TECHNIQUES TO ALLOW US TO IDENTIFY MICRO CALCIFICATIONS IN THE PLACENTA STARTING EARLY ON IN GESTATION. THIS TECHNOLOGY WAS ALSO ADAPTED FROM LOOKING AT THE BREAST CANCER SMALL TUMORS AND ASSESSING THE MICRO VASCULATURE IN THEM WITH REGARDS TO THE PRESENCE OR ABSENCE OF CANCER. THERE ARE MORE MODERN AND NOVEL TECHNIQUES ALSO AVAILABLE TO US HERE. THIS IS DENSITY ANALYSIS OF THE ULTRASOUND BEAM THAT ALLOWS YOU TO ASSESS THE HOMOGENEITY OF THE SPECKLE PATTERN OF THE PLACENTA. THIS IS A HOMOGENEOUS PLACENTA AT 37 WEEKS, AND YOU CAN QUANTITATE THIS BY DESIGNATING THE AREA OF INTEREST AND GETTING NUMERICAL VALUES THAT YOU CAN COMPARE HOMOGENEITY FROM ONE PLACENTA TO THE OTHER. ALSO WE CAN ASSESS THE LOSS OF ENERGY OF THE ULTRASOUND BEAM THAT COMES THROUGH WITH SOME MODERN SOPHISTICATED SEC NEEK TE CALLED ATTENUATION IMAGING. IT LOSES DUE TO ABSORPTION OF THE HEAT OR SCATTERING OF THE WAVE ITSELF AND YOU CAN NORMALIZE THESE VALUES THAT GIVES YOU SOME -- I CAN SEE THIS AS AN ABNORMAL PLACENTA AND YOU CAN SEE THE VARIATIONS IN THE COLOR AND THE QUANTIFICATION OF THAT. NOW WE HAVE USED THESE ULTRASOUND TECHNIQUES TO STUDY THE PLACENTA STARTING IN 2015 ONWARD, AND THIS STUDY WAS A COLLABORATION BETWEEN EDMS AND UTMD WITH MY CO-PI, DR. GEORGE SAADE. SO WHAT WE'VE DONE IS, THIS WAS ALSO DONE ON THE CANON MEDICAL COLLABORATION. THIS WAS A PROSPECTIVE LONGITUDINAL COHORT STUDY WHERE WE RECRUITED 610 PREGNANCIES OVER FIVE YEARS. WE DID LONGITUDINAL EVALUATION FROM 13 WEEKS TO TERM, WE DID A TOTAL OF EIGHT ULTRASOUND EXAMINATIONS PER PREGNANCY. OUR PRIMARY OUT COME WAS ANY PRETERM DELIVERY AT LESS THAN 37 WEEKS AND THE GOAL WAS TO DEVELOP A MULTIVARIATE MODEL TO PREDICT A PRETERM DELIVERY LESS THAN 37 WEEKS LOOKING AT THE ULTRASOUNDS IN EARLY GESTATION. THIS SLIDE SHOWS EVERY TWO WEEKS FROM 12 TO 13 WEEKS, THEN EVERY FOUR WEEKS UNTIL DELIVERY. WE LOOKED AT FETAL BIOMETRY, WE LOOKED AT 3D VOLUMES OF FETAL ORGANS AND THE PLACENTA. WE LOOKED AT THE SPIRAL ARTERIES, THE INTERVILLOUS ARTERIOLES, UTERINE ARTERY, FETAL CARDIAC FUNCTION. WE ALSO ASSESSED PLACENTAL TISSUE DENSITY BY LOOKING AT SHEAR-WAVE, PRESENCE OF MICRO VASCULATURE, PLACENTAL INTENSITY ANALYSIS AND ATTENUATION IMAGING, MATERNAL BLOOD FOR STORAGE AND ALSO COLLABORATED WITH THE ENVIRONMENTAL DIVISION OF THE NIH TO REALLY ASSESS THE PRESENCE O -- OTHERS ARE BEING STUDIES AS WE'RE SPEAKING. SO WHAT WE'VE DONE WITH SPIRAL ARTERIES USING SMI, SUPERB MICRO MICROVASCULAR IMAGING, WE IDENTIFIED PLACENTAL SPIRAL ARTERIES, AND WE AVERAGED SIX SPIRAL ARTERIES PER ULTRASOUND TO ASSESS FOR THE PEAK SYSTOLIC VELOCITY AND THE P.I. ON THE FETAL SIDE, WE USED AGAIN SUPERB MICROVASCULAR IMAGING TO IDENTIFY THE FETAL PLACENTAL ARTERIOLES, WE MEASURED THEIR NUMBER, THE AND WE AVERAGE WOULD FOR THE MEASUREMENT OF THE PEAK VELOCITY. WE ALSO MEASURE THE UTERINE ARTERY USING COLOR DOPPLER TO IDENTIFY THEM, AND WE AVERAGED THE RIGHT AND LEFT URINE ARTERY FOR THE MEASUREMENT FOR THE PREGNANCY, AND WE NOTED THE PRESENCE OR ABSENCE OF A NOTCH ALSO. SO SHEAR WAVE ELASTOGRAPHY, STANDARDIZED AND HAS GOOD VARIABILITY. WE MEASURED IT FROM THE CIRCULAR SHAPED REGION OF INTEREST AS YOU SEE ON THE SLIDE. WE OBTAINED THAT BETWEEN MATERNAL RESPIRATORY EFFORTS AND THE ABSENCE OF FETAL MOVEMENTS AND WITHOUT ANY COMPRESSION FROM THE TRANSDUCER. THE PRESENCE OR ABSENCE OF CALCIUM IN THE PLACENTA WAS ALSO DETERMINED, AND THAT WAS NOTED, THE PRESENCE OR ABSENCE AND ALSO THE QUANTITY OF THAT. NOW LET ME SHARE WITH YOU SOME OF THE RESULTS IN THE REMAINING TIME. OF THE 610 PREGNANCIES, 511 OR 84% DELIVERED AT OR AFTER 34 WEEKS AND CONSTITUTED OUR CONTROL POPULATION, AND 99 PREGNANCIES DELIVERED AT LESS THAN 37 WEEKS AND THERE ARE THE CASES. WHEN WE LOOKED AT THE SPIRAL ARTERY PULSATILITY INDEX, THESE ARE THE NORMAL PREGNANCIES, THE CONTROLS THAT ARE DESIGNATED IN THE GREY CIRCLES, AND YOU CAN SEE THAT STARTING EARLY IN GESTATION, THE PULSATILITY INDEX DECREASES INDICATING THAT PLACENTAL ADAPTATION IS ONGOING INTO THE SECOND TRIMESTER. AND THE DECREASE IN P.I. IMPLIES IMPEDANCE OF THE PLACENTA IS DECREASING ALSO, CONFIRMING THE ADAPTATION OF THESE VESSELS FROM EARLY PREGNANCY ONWARD. AND WHEN YOU LOOK AT THE CHANGES HERE IN THE PLACENTA, APOLOGIZE FOR THIS SLIDE, IT'S NOT SHOWING THE SCHEMATIC DRAWING, BUT YOU CAN SEE THE CHANGE IN THE P.I., IN THE WAVEFORM ITSELF FROM THE FIRST TRIMESTER ON THE LEFT SIDE OF YOUR SCREEN INTO THE THIRD TRIMESTER ON THE RIGHT SIDE OF YOUR SCREEN. THEN THE SLIDES I'LL BE SHOWING YOU MOVING FORWARD, THE CONTROLS ARE IN GREY AND THE CASES ARE IN RED. YOU SEE FOR THE NUMBER OF SPIRAL ARTERIES, THROUGHOUT GESTATION, WE SAW MORE IN THE CONTROLS NUMERICALLY AND REACHED STATISTICAL SIGNIFICANCE IN THE SECOND, FOURTH, FIFTH AND SIXTH ULTRASOUND EXAMINATION AS YOU SEE HERE. WHEN WE LOOKED AT THE PEAK SYSTOLIC VELOCITY BETWEEN CASES AND CONTROLS, THE PEAK SYSTOLIC VELOCITY WAS A BIT HIGHER IN THE CONTROLS IN THE SECOND AND THIRD ULTRASOUND BUT DID NOT REACH STATISTICAL SIGNIFICANCE BEYOND THAT. WHEN WE LOOKED AT THE PULSATILITY INDEX OF THE SPIRAL ARTERIES, THERE WAS NO -- ALTHOUGH THE CASES HAD HIGHER NUMERICALLY PULSATILITY INDEX IMPLYING A SLIGHTLY HIGHER IMPEDANCE IN THE PLACENTA, THIS DID NOT REACH ANY STATISTICAL SIGNIFICANCE. NOW WHEN WE LOOK ON THE FETAL SIDE OF THE PLACENTA, AGAIN YOU'LL SEE SIGNIFICANT CHANGES IN THE SPECTRAL DOPPLER OF THESE INDICES AS YOU MOVE IN PREGNANCY. THAT IS RELATED TO LOWER IMPEDANCE IN THE PLACENTA ON THE FETAL SIDE PROBABLY ALSO ASSOCIATED WITH INCREASING CARDIAC OUTPUT IN THE FETUS. AND WHEN YOU LOOK AT THE FETAL PLACENTAL ARTERY, AGAIN WE SAW NO SIGNIFICANT DIFFERENCES BETWEEN THE CASES AND THE CONTROLS WITH REGARDS TO THE P.I.. WITH REGARDS TO THE NUMBERS, AGAIN REALLY NO SIGNIFICANT DIFFERENCE THROUGHOUT GESTATION. AND THE PEAK CYST S SYSTOLIC WAT STATISTICALLY DIFFERENT IN THE COHORT. WHETHER WE LOOK AT SHEAR WAVE EE LASING TOGRAPHY, THERE WAS NO CHANGE DURING PREGNANCY AND WE SHOWED NO DIFFERENCE BETWEEN CASES AND CONTROLS IN OUR COHORT. NOW, WHEN WE LOOK AT THE UTERINE ARTERY, YOU CAN SEE EARLY ON IN PREGNANCY, CASES HAD HIGHER URINE ARTERIES THAN CONTROL, BUT THEN THROUGHOUT PREGNANCY WITH EXCEPTION OF 24, 25 WEEKS THERE WAS REALLY NO DIFFERENCE BETWEEN THE TWO. AS WE START LOOKING AT RATIOS TRYING TO IDENTIFY, COULD WE IDENTIFY A PLACENTAL INDEX, OVER THE SPIRAL ARTERIES NUMBER WAS SIGNIFICANTLY DIFFERENT THROUGHOUT MOST OF GESTATION BETWEEN CASES AND CONTROLS, AND WHEN WE LOOKED AT THE UTERINE ARTERY PI OVER THE NUMBER OF ARTERIOLES YOU COULD ALSO SEE SOME SIGNIFICANT DIFFERENCES BETWEEN CASES AND CONTROLS. LOOKING AT THAT PRESENCE OF MICRO CALCIFICATIONS IN THE PLACENTA, THIS WAS HIGHLY SIGNIFICANT IN THE FIRST TRIMESTER ULTRASOUND WITH ABOUT A THREE FOLD INCREASE IN THE PRESENCE OF MICROCALCIFICATIONS IN PREGNANCIES IN THE FIRST TRIMESTER, AND THAT ALSO WAS PRESENT AT THE ULTRASOUND AT 16 TO 17 WEEKS AND 28 AND 29 WEEKS. WHEN WE LOOKED AT THE MULTIVARIATE ANALYSIS USING THESE VARIABLES AND THE REGRESSION MODEL TO DETERMINE SIGNIFICANCE IN OUR MODEL, WE SHOW THAT MATERNAL AGE, THE RATIO OF THE UTERINE ARTERY PI OVER PLA SEE TALL 15 TALL ARTERIOLES AND THE PRESENCE OF MICROCALCIFICATIONS REMAIN SIGNIFICANT ASSOCIATIONS BETWEEN CASES AND CONTROLS. SO HOPEFULLY WHAT I HAVE SHOWN YOU IN MY PRESENTATION, THAT WE CONFIRMED OUR ABILITY TO INVESTIGATE PLACENTAL MICRO VASCULATURE AND TISSUE CHARACTERISTICS IN VIVO STARTING IN EARLY GESTATION. WE DEMONSTRATED THAT PLACENTAL ADAPTATION STARTS IN THE FIRST TRIMESTER AND EXTENDS INTO THE MID SECOND TRIMESTER. WE ALSO SHOWED PLACENTAL CHANGES THAT PREDISPOSES TO ADVERSE PREGNANCY OUTCOME ARE EVIDENT IN THE FIRST TRIMESTER, AND WE'RE HOPING THAT THIS EARLY PREGNANCY RISK USING THESE ULTRASOUND TOOLS MAY ALLOW BETTER TARGETING OF PREVENTIVE STRATEGIES OR APPROACHES INTO THE FUTURE. I WOULD LIKE TO TAKE A MOMENT TO THANK BOTH THE EVMS AND THE UTMB RESEARCH TEAMS FOR WORKING REALLY HARD TO STUDY THIS LARGE PROSPECTIVE COHORT. I WOULD LIKE ALSO TO THANK DR. WEINBERG FOR HIS VISION AND LEADING THE HUMAN PLACENTA PROJECT, DR. KELLEY FERGUSON FRFORHER RESEARCH TEAM FULLY ENIMAIJED LOOKING AT FETAL ORGAN VOLUMES AND MEASUREMENTS IN CORRELATION WITH ENVIRONMENTAL EXPOSURE, AND TODD FROM CANON AND GW FOR THEIR SUPPORT IN THE STUDY. LAST I WOULD LIKE TO ALSO THANK OUR PREGNANT INDIVIDUALS WHO HAVE REALLY GIVEN THEIR TIME AND EFFORT TOWARDS US UNDERSTANDING CHANGES IN THE PLACENTA STARTING FROM EARLY GESTATION. THANK YOU VERY MUCH FOR YOUR ATTENTION. >>THANK YOU SO MUCH. NEXT WE'LL HAVE THE PLEASURE OF HEARING FROM DR. RACHEL HARDEMAN. SHE IS TENURED PROFESSOR AT THE UNIVERSITY OF MINNESOTA SCHOOL OF PUBLIC HEALTH. SHE IS THE BLUE CROSS ENDOWED PROFESSOR IN HEALTH AND RACIAL EQUITY AND FOUNDING DIRECTOR OF THE CENTER FOR ANTI-RACISM RESEARCH FOR HEALTH EQUITY. SHE IS A REPRODUCTIVE HEALTH RESEARCHER FOCUSING ON WAYS BETWEEN STRUCTURAL RACISM AND HEALTH. SHE HAS RECEIVED MULTIPLE AWARDS FOR HER WORK AND IS ACTIVE WITH ORGANIZATIONS THAT SEEK TO ACHIEVE HEALTH EQUITY. DR. HARDEMAN, THANK YOU FOR BEING HERE. WELCOME. WE LOOK FORWARD TO YOUR TALK. >>THANK YOU VERY MUCH FOR HAVING ME. GOOD MORNING, EVERYONE. I WANT TO START BY THANKING DR. BIANCHI FOR THE INVITATION AND ALSO THANKING NICHD FOR THEIR SUPPORT OF MY RESEARCH OVER THE YEARS. I HAD A SLIDE DECK PREPARED FOR YOU, IT WAS BEAUTIFUL, BUT THE FILE BECAME CORRUPTED SO I WON'T BE SHARING THAT WITH YOU ALL TODAY SO BEAR WITH ME. I'M GOING TO GO WITHOUT SLIDES. AND JUST -- I WANT TO START BY, YOU KNOW, SHARING THAT -- MY THOUGHTS TODAY, THE THOUGHTS ARE BOBOTH ABOUT MY WORK AND RESEARH AND THE FIGHT FOR REPRODUCTIVE HEALTH EQUITY BUT ARE ALSO VERY ASPIRATIONAL AS WE THINK ABOUT WHAT'S NEXT IN THIS SPACE AND WHERE WE SHOULD BE HEADED. IT'S NOT GOING TO BE SOLELY SORT OF A RESEARCH/DATABASE PRESENTATION BUT REALLY IT'S MEANT TO BE THOUGHT PROVOKING AS WE CONSIDER THE PATH FORWARD TOWARDS EQUITY. SO A FUTURE I WANT TO SEE IS ONE THAT STARTS WITH LOVE. LOVE IS NOT NECESSARILY A SCIENTIFIC TERM, ALTHOUGH MAYBE IT SHOULD BE, BUT I THINK IT'S CRITICAL TO HOW WE APPROACH THE SCIENCE AND WHY I PERSONALLY DO THE SCIENCE. AND AN ARTICLE I'VE PUBLISHED IN THE NEW ENGLAND JOURNAL OF MEDICINE WITH TWO OF MY INCREDIBLE COLLEAGUES IN THE MIDST OF A GLOBAL PANDEMIC THAT WAS DISPROPORTIONATELY AND CONTINUES TO DISPROPORTIONATELY IMPACT BLACK AND BROWN EXEUNTS COMMUNITIES, ONE OF THE THINGS WE STATED VERY CLEARLY AND INTENTIONALLY IN THAT ARTICLE WAS THAT GEORGE FLOYD WAS LOVED. AND THE FACT THAT WE CONTINUOUSLY NEED TO REMIND ONE ANOTHER THAT GEORGE FLOYD WAS LOVED, THAT BLACK PEOPLE ARE LOVED, HAS EVERYTHING TO DO WITH THE RACIAL INEQUITIES THAT I TACKLE IN MY RESEARCH EVERY SINGLE DAY. BECAUSE LOVE IS NOT OUR DEFAULT. WE'RE CONSTANTLY HAVING TO DEMONSTRATE AND PROVE THE HUMANITY OF PEOPLE IN OUR SOCIETY, IN OUR COMMUNITIES EVERY SINGLE DAY. SO THESE ARE WORDS THAT I WROTE FOR A COMMUNITY EVENT RIGHT HERE IN THE TWIN CITIES, IN MINNEAPOLIS, AS OUR COMMUNITY WAS DEALING AND GRAPPLING WITH THE PAINFUL TRAUMA OF GEORGE FLOYD'S MURDER AT THE HAND OF POLICE. SO WHAT I WROTE WAS, BLACK PEOPLE ARE LOVED. WE REMAIN OUT OF LOVE, WE SHOW OVER AND OVER AGAIN THAT LOVE IS THE MOST POWERFUL FORCE ON THE PLANET. WE ARE AN EMBODIMENT OF THE POWER OF LOVE TO PERSEVERE AND TO FLOURISH, WE'VE USED LOVE TO HEAL AND FIND STRENGTH WHEN WE THOUGHT THERE WAS NONE. IT IS A LOVE FROM AND OF OUR ANCESTORS THAT WILL CONTINUE TO NURTURE US IN OUR TIME OF NEED, AND THIS LOVE OF OURSELVES AND OUR COMMUNITY WILL HOLD US AS WE STAND STRONG IN THE FACE OF TODAY'S CHALLENGES AND TOMORROW'S TRIUMPHS. SO A GOAL OF MY RESEARCH IS TO MANIFEST RACIAL JUSTISE SO THAT BLACK WOMEN AND GIRLS CAN LIVE TO THEIR FULL GREATNESS AND GLORY. RIGHT NOW BASED ON THE INEQUITIES WE SEE IN MATERNAL AND INFANT HEALTH AND REPRODUCTIVE HEALTH, WE KNOW THAT'S NOT HAPPENING. I ARGUE THAT TO GET THERE, WE HAVE TO BE WILLING TO FIRST AND FOREMOST LOVE BLACK PEOPLE, WE HAVE TO BE WILLING AND ABLE TO PROTECT WOMEN AND GIRLS, AND PRIORITIZE OUR SAFETY AND BELIEVE IN OUR HUMANITY. WE HAVE A LOT OF EXAMPLES RIGHT NOW, BOTH HISTORICALLY AS WELL AS RIGHT NOW THIS VERY MOMENT THAT RUN COUNCIL 1 COUNTER TO AE VALUES WHICH IS WHY I THINK IT'S IMPORTANT TO UNDERSTAND WHAT WE'RE UP AGAINST, IT'S GOING TO ALLOW US TO ENVISION WHAT'S POSSIBLE IN A MUCH MORE CLEAR WAY. SO I COME TO YOU AS A MOM, AS A DAUGHTER, AS A SISTER, AND AS A SCHOLAR WHO WORKS EVERY SINGLE DAY TO MANIFEST CHANGE FOR BLACK WOMEN AND GIRLS IN OUR COUNTRY. AS A RESEARCHER, I USE THE TOOLS OF SCIENCE AND INQUIRY TO CREATE THE EVIDENCE BASE TO ENACT AND INSIGHT CHANGE, AND I'M ALWAYS THINKING ABOUT THE POWER OF DATA, THE NUMBERS, ALLOW US THE STORIES AND HUMANITIES BEHIND THOSE NUMBERS IN ORDER TO IMPROVE REPRODUCTIVE HEALTH OUTCOMES. SO TODAY I'LL SHARE A LITTLE BIT OF SOME OF THAT DATA AND SOME OF THE STORIES AS WE BEGIN TO SORT OF IMAGINE AND REIMAGINE WHAT'S POSSIBLE. AND AS I DO THAT, AGAIN, I ASK YOU TO HOLD IN YOUR MINDS THAT IDEA OF LOVE AND EMBODYING WHAT AND WHO WE LOVE AS WE MOVE THIS WORK FORWARD. SO AS I SAID, I THINK THERE'S A LOT OF THINGS IN OUR SOCIETY THAT CURRENTLY RUN COUNTER TO THE HUMANITY OF BIRTHING PEOPLE, GENERALLY SPEAKING, AND CERTAINLY PEOPLE FROM RACIALIZED COMMUNITIES, FROM BLACK AND BROWN COMMUNITIES IN PARTICULARLY. SO STARTING OUR SCIENCE FROM A PLACE OF LOVE OFFERS A SORT OF CRITICALLY IMPORTANT FRAMEWORK FOR US TO THINK ABOUT HOW WE DO THIS WORK, HOW WE SEE THE NEXT FIVE TO 10 YEARS UNFOLDING. AND SO WE KNOW AND WE HEARD IN THE OPENING REMARKS SOME OF THE INEQUITIES WE'RE GRAPPLING WITH. WE KNOW THEY'VE PERSISTED FOR A VERY, VERY LONG TIME. FOR INSTANCE, INFANT MORTALITY RATES, WE'VE SEEN RACIAL INEQUITIES BETWEEN BLACK AND WHITE INFANTS AND FOR MORTALITY FOR AS LONG AS THOSE DATA HAVE BEEN COLLECTED, WHICH IS A VERY LONG TIME. WE HAVE IN THE PAST FEW YEARS REALLY TURNED OUR ATTENTION TO THE FACT THAT WE ARE THE ONLY INDUSTRIALIZED COUNTRY WITH A RISING MATERNAL MORTALITY RATE AND WHAT WE'RE SEEING IS THAT BLACK AND INDIGENOUS BIRTHING PEOPLE ARE DRIVING THAT RATE SUCH THAT BLACK BIRTHING PEOPLE ARE FOUR TIMES MORE LIKELY TO EXPERIENCE MATERNAL DEATH. SO I THINK WE'VE DONE AN INCREDIBLE JOB AS RESEARCHERS OF DOCUMENTING THE INEQUITIES THAT ARE PLAGUING OUR SOCIETY THAT ARE IMPACTING POPULATION HEALTH. AND WE'VE MOVED INTO THE SPACE OF STUDYING THE MECHANISMS THAT CONTRIBUTE TO THESE INEQUITIES, AND REALLY THINKING ABOUT WHAT THOSE MECHANISMS ARE AND THEN WHAT ARE THE LEVERS, WHAT'S THE SOLUTION, HOW DO WE CHANGE THAT, HOW DO WE INFLUENCE OUTCOMES. AND I'M GOING TO TALK A LITTLE ABOUT SOME OF THE RESEARCH I'M DOING IN THIS SPACE SORT OF THINKING ABOUT THE MECHANISMS. ONE OF THE MECHANISMS THAT MY TEAM AND I ARE THINKING ABOUT WHEN WE THINK ABOUT THE ADVERSE OUTCOMES IN MATERNAL AND INFANT HEALTH FOR BLACK BIRTHING PEOPLE AND THEIR INFANTS IS AROUND POLICING. WHICH I THINK FOR A LOT OF FOLKS MAY NOT BE THIS SORT OF OBVIOUS CONNECTION, RIGHT, TO REPRODUCTIVE HEALTH OUTCOMES, BUT I WOULD ARGUE THAT THE INTERSECTIONS OF POLICE AND REPRODUCTIVE HEALTH ARE INEXTRICABLY LINKED. TO UNDERSTAND THAT, WE HAVE TO UNDERSTAND THE NOTION OR FRAMEWORK OF REPRODUCTIVE JUSTICE, WHICH REFERS TO NOT JUST THE HUMAN RIGHT TO MAINTAIN PERSONAL BODILY AUTONOMY AND THE RIGHT TO HAVE CHILDREN OR NOT HAVE CHILDREN. IT ALSO REFERS TO THE RIGHT TO PARENT THE CHILDREN THAT WE HAVE IN SAFE COMMUNITIES, COMMUNITIES THAT ARE FREE FROM VIOLENCE THAT HAVE ALL OF THE RESOURCES THAT WE NEED THAT WHEN WE NEED TO THRIVE. SO THE CONNECTION BETWEEN THE PRINCIPLES OF REPRO DUGTIVE JUSTICE TEARS APART EXISTING FAMILIES AND COMMUNITIES, STEALS CHILDREN THAT BLACK PARENTS ALREADY HAVE, AND ULTIMATELY CREATES A SOCIAL ENVIRONMENT WHERE BLACK CHILDREN, BLACK INFANTS, BLACK MOTHERS ARE UNABLE TO THRIVE. I'M GOING TO SHARE A LITTLE BIT OF THE RESEARCH THAT'S SORT OF BORNE OUT IN THIS SPACE THAT MY TEAM HAS LED, AND FIRST -- THE FIRST THING I'LL SHARE IS A RESEARCH STUDY WE PUBLISHED LAST YEAR IN JANA WHERE I AND MY COLLEAGUES THOUGHT TO EXPLORE THE LINK BETWEEN POLICING AND SPECIFICALLY POLICE CONTACT OR POLICE SURVEILLANCE AND PRETERM BIRTH. SO BIRTH BEFORE 37 WEEKS GESTATION. SO WE POSED THE QUESTION, IS LIVING IN A NEIGHBORHOOD WITH HIGH POLICE PRESENCE ASSOCIATED WITH AN INCREASED RISK OF PRETERM BIRTH? THIS STUDY WAS LOOKING AT -- IN MINNEAPOLIS AND WE FOUND STATISTICALLY NEIGHBORHOODS IN MINNEAPOLIS ARE RACIALLY SEGREGATED DUE TO RED LINES RACIAL SEPARATION AND THAT BLACK NEIGHBORHOODS ARE PREDOMINANTLY BLACK NEIGHBORHOODS ARE MORE LIKELY TO BE OVERPOLICED AND OVERSURVEILED IN COMPARISON TO PREDOMINANTLY WHITE NEIGHBORHOODS. OUR ANALYSIS FURTHER FOUND THAT OVERPOLICING, SO A DISPROPORTIONATE AMOUNT OF POLICE CONTACT AND POLICE SURVEILLANCE WAS ASSOCIATED WITH HIGHER ODDS OF PRETERM BIRTH, PARTICULARLY FOR U.S.-BORN BLACK BIRTHING PEOPLE IN MINNEAPOLIS. WE'VE ALSO CONDUCTED SOME QUALITATIVE ANALYSIS AROUND THE INTERSECTIONS OF BLACK MOTHERHOOD AND POLICING THAT ELUCIDATES THIS -- SORT OF BEARS OUT IN THESE FINDINGS AS WELL AND WE'VE LEARNED A LOT ABOUT THE STRESS THAT BLACK PEOPLE OF REPRODUCTIVE AGE EXPERIENCE LIVING IN COMMUNITIES THAT ARE HEAVILY SURVEIL BID POLICE. SO MY RESEARCH AND, YOU KNOW, THIS STUDY ARE -- THE STUDY I JUST SHARED WITH YOU ARE STEEPED IN WHAT I WOULD ARGUE AS HISTORIC KNOWLEDGE OF STRUCTURAL RACISM AND HOW IT'S MANIFESTED IN POLICING AND BLACK MOI NORTHS AND I'LL TALK ABOUT THAT IN JUST A SECOND BUT I THINK IT'S IMPORTANT TO SAY WE COULDN'T HAVE DEVELOPED A WELL INFORMED STUDY AND ANALYSIS WITHOUT MAKING THE CONNECTION TO AND NAMING STRUCTURAL RACISM. SO WHEN I'M REFERRING TO STRUCTURAL RACISM, I'M TALKING ABOUT THE TOTALITY OF WAYS IN WHICH SOCIETIES FOSTER RACIAL DISCRIMINATION THROUGH REINFORCING SYSTEMS OF HOUSING, EDUCATION, EMPLOYMENT, CREDIT, MEDIA, HEALTHCARE, POLICING, CRIMINAL JUSTICE AND MUCH MORE. AND IN THESE PATTERNS AND PRACTICES REINFORCE BELIEFS, VALUES AND DISTRIBUTION OF RESOURCES AND ULTIMATELY MAKE US SICK. AND THAT DEFINITION IS THANKS TO BAILEY AND COLLEAGUES FROM THEIR INCREDIBLE PIECE IN THE LANCET A COUPLE YEARS AGO. SO I FOCUS ON STRUCTURAL RACISM IN MY WORK BECAUSE I THINK THAT IT OFFERS A CONCRETE AND FEASIBLE APPROACH, IMPROVING POPULATION HEALTH, WHEREAS WHEN WE FOCUS ON IMPLICIT BIAS, I THINK WE GET CAUGHT UP IN TALKING ABOUT INDIVIDUAL BAD ACTORS, WE GET CAUGHT UP IN BEING VERY SORT OF MICROSCOPIC IN THE WAY WE'RE EXAMINING THESE ISSUES AND WE FAIL TO UNDERSTAND THAT WE'RE DEALING WITH SORT OF A DEEP HISTORY, THAT IT'S GOING TO TAKE A LOT OF EFFORT AND A LOT OF DIFFERENT SPACES TO UNDO IT. WE ALSO CAN CREATE AN IMPACTFUL STUDY PROPOSAL, THE ANALYSIS THAT I JUST SHARED WITH YOU WITHOUT A KNOWLEDGE OF THE HISTORY OF POLICING IN THE UNITED STATES. I WOULD ARGUE THAT POLICING IS ONE OF THE OLDEST IF NOT THE OLDEST FORM OF STRUCTURAL RACISM. IT'S DEEPLY EMBEDDED IN A HISTORY OF CHATTEL SLAVERY AND THE NOTIONS AROUND POLICING OF BLACK BODIES. SO BRIEFLY, DATING BACK TO THE 16 HUNDREDS, THE UNITED STATES WHICH WAS THEN A BRITISH COLONY, TOWNS AND CITIES WOULD CONTROL THEIR COMMUNITIES PO PREVENT BURGLARIES, ARSON AND OVERALL TO MAINTAIN ORDER. THEN AS THE POPULATION INCREASED IN THE UNITED STATES, SATURDAYING IN SOUTH C SOUTH CAA AND EXPANDING TO OTHER SOUTHERN STATES, LAYING ROOTS FOR THE NATION'S LAW ENFORCEMENT AS WE SEE IT AND KNOW IT TODAY. SO CONTEMPORARY ISSUES SURROUNDING POLICING AND RACIAL INJUSTICE HAVE THIS DEEP -- HAVE -- NICHD SINCE EXAMINED HOW -- REPRODUCTIVE HEALTH. SO LEVERAGING OUR UNDERSTANDING OF THIS HISTORY, LEVERAGING OUR UNDERSTANDING OF WORK AROUND HYPOTHESIS AND WEAR AND TEAR BLACK BODIES, THAT CHRONIC EXPOSURE TO POLICE VIOLENCE AND ACUTE INSTANCES OF POLICE VIOLENCE LIKE LIVING IN CLOSE PROXIMITY TO A HIGH PROFILE EVENT OF POLICE VIOLENCE MAY IMPACT THINGS LIKE PRETERM BIRTH, LOW BIRTH WEIGHT, SMALL FOR GESTATIONAL AGE BIRTHS, AND EVEN MATERNAL MORBIDITY AND MORTALITY IN SOME CASES. WE'RE IN YEAR TWO OF THAT STUDY AND I LOOK FORWARD TO BEING ABLE TO COME BACK AND SHARE SOME OF THOSE FINDINGS WITH YOU ON A FUTURE -- AT A FUTURE DATE. I NOW WOULD SHARE SORT OF THE CONCEPTUAL MODEL OR THE CONCEPTUAL FRAMEWORK THAT WE USE TO INFORM THIS WORK. BUT SINCE I CAN'T DO THAT, I'LL TRY TO DESCRIBE IT REALLY BRIEFLY. THIS IS A MODEL THAT I DEVELOPED IN COLLABORATION WITH MY COLLEAGUE, DR. WALLACE AND TULANE, WHERE WE THINK ABOUT HOW STRUCTURAL RACISM IS -- ACROSS THE LIFE FORCE. SO EVEN PRE-CONCEPTION, BEFORE SOMEONE BECOMES PREGNANT, THEY'RE BEING EXPOSED TO DIFFERENT VIOLENCE, POLICE VIOLENCE IN PARTICULAR IN THEIR COMMUNITIES AND THEIR SOCIAL ENVIRONMENTS, AND THEN -- AND AGAIN SO THAT IS BRINGING THEM INTO PREGNANCY SORT OF ALREADY UNWELL DUE TO THAT STRESS PATHWAY, THEN YOU HAVE THESE ACUTE EXPOSURES LIKE LIVING THROUGH THE CIVIL UNREST THAT ENSUED AFTER GEORGE FLOYD'S MURDER HERE IN MY HOMETOWN, JUST ABOUT FIVE MINUTES FROM WHERE I CURRENTLY SIT. SO I THINK WE HAVE A LOT OF WORK TO DO TO SORT OF THINK ABOUT WHAT THAT MEANS FOR -- AND WHAT IT MEANS FOR THE SOCIAL ENVIRONMENTS THAT PREGNANT PEOPLE ARE LIVING IN. AND I'M REAL IED REALIZING I'M N TIME SO I'M GOING TO JUMP TO SOMETHING ELSE REALLY QUICKLY AND THEN I'LL CLOSE OUT. THE OTHER THING I THINK IS IMPORTANT AS WE THINK ABOUT THE PATH FORWARD, WE HAVE TO THINK ABOUT THE INEXTRICABLE LINK OF INFANT MORTALITY AND MORBIDITY AND REPRODUCTIVE JUSTICE. AS IT SITS WITH THE THE CURRENT RESTRICTIONS ON REPRODUCTIVE BODILY AUTONOMY. THE FREEDOM TO DECIDE WHETHER AND WHEN TO HAVE A CHILD HAS BEEN STRIPPED FROM PEOPLE AND WE HAVE IMPORTANT WORK AS RESEARCHERS TO CONTRIBUTE TO THE EVIDENCE BASE THAT RESTRICT CHOICE ON BLACK AND BROWN BODIES. I'LL BRIEFLY CLOSE WITH JUST SAYING THAT -- I HAD SO MUCH MORE TO SAY, I APOLOGIZE. THIS IS WHY SLIDES KEEP ME MORE ON TRACK. BUT RECENTLY A PAPER WAS PUBLISHED IN THE AMERICAN JOURNAL OF PUBLIC HEALTH, STRUCTURAL RACISM THROUGH THE LENS OF ANTI-ABORTION POLICY, MEANING THAT I THINK WE HAVE A LOT OF WORK TO DO TO THINK ABOUT HOW WE DO RESEARCH THROUGH THIS LENS AND PARTICULARLY THROUGH THE MEASUREMENT OF STRUCTURAL RACISM. I WAS GOING TO TALK A LOT ABOUT -- O OR A LITTLE BIT ABOUT THE MEASUREMENT OF STRUCTURAL RACISM AS A PATH FORWARD, AS THAT'S A CORNERSTONE TO THE WORK THAT I'M LEADING, BUT PERHAPS WE CAN TACKLE THAT IN THE Q & A BECAUSE I DO NOT WANT TO TAKE AWAY FROM MY CO-PANELISTS' TIME. SO WITH THAT, I'M GOING TO THANK YOU FOR YOUR TIME AND I LOOK FORWARD TO YOUR QUESTIONS. >>DR. HARDEMAN, THANK YOU. BEFORE WE GET TO OUR NEXT SPEAKER I'D JUST LIKE TO REMIND FOLKS THAT YOU CAN EMAIL YOUR QUESTIONS TO NICHDPRESS@MAIL.NIH.GOV, SO THAT WE CAN READ THEM AND HAVE THE PANEL RESPOND TO THEM AT THE CONCLUSION OF THE PRESENTATIONS. AGAIN THAT EMAIL ADDRESS IS NICHDPRESS@MAIL.NIH.GOV. NOW I'M PLEASED TO INTRODUCE OUR NEXT SPEAKER, DR. TORI METZ, WHO IS A PRACTICING MATERNAL-FETAL MEDICINE SUBSPECIALIST AT UNIVERSITY OF UTAH HEALTH. WHERE SHE IS VICE CHAIR FOR RESEARCH AND ASSOCIATE PROFESSOR OF OBSTETRICS AND GYNECOLOGY. DR. METZ IS A MEMBER OF THE ACOG COMMITTEE ON OBSTETRIC CLINICAL PRACTICE GUIDELINES, AND THE CLINICAL DOCUMENTARY VIEW PANEL. SHE ALSO SERVES AS THE ASSOCIATE REVIEW EDITOR FOR OBSTETRICS, OBSTETRICS AND GYNECOLOGY, COMMONLY KNOWN AS THE GREEN JOURNAL. SHE IS PRINCIPAL INVESTIGATOR IN NICHD'S MATERNAL-FETAL MEDICINE UNIT'S CLINICAL TRIAL NETWORK. THANK YOU SO MUCH, DR. METZ. THE FLOOR IS YOURS. >>EXCELLENT. THANK YOU SO MUCH FOR THE INTRODUCTION. IT'S REALLY A PLEASURE TO BE HERE. AND TRULY AN HONOR TO HAVE THE OPPORTUNITY TO PRESENT TODAY ABOUT THE NICHD MATERNAL-FETAL MEDICINE UNITS NETWORK. I HAVE TITLED THIS TALK PROVIDING EVIDENCE TO IMPROVE OUTCOMES BECAUSE I THINK THAT'S REALLY WHAT THE MFMU DOES AND HOPEFULLY I CAN CONVINCE ALL OF YOU OF THAT TODAY. SO FOR THOSE WHO AREN'T FAMILIAR, THE EUNICE KENNEDY SHRIVER NICHD MATERNAL-FETAL MEDICINE UNITS NETWORK WAS ESTABLISHED IN 1986. THE PRIMARY OBJECTIVE IS TO IMPROVE OBSTETRIC CARE, PREGNANCY HEALTH AND OUTCOMES FOR PREGNANT PEOPLE AND THEIR BABIES. AND WE REALLY DO THIS THROUGH THE CONDUCT OF WELL DESIGNED MULTICENTER TRIALS AND PERINATAL MEDICINE. THIS DEMONSTRATES THE CURRENT CENTERS. THE BLUE STARS ARE STARS OF ALL THE EXISTING CENTERS, AND YOU CAN SEE THE LIST OF PIs OVER THERE ON THE RIGHT. AND THE GREEN STAR IS THE DATA COORDINATING CENTER CURRENTLY AT GEORGE WASHINGTON UNIVERSITY. SO I'M GOING TO TALK A LITTLE BIT ABOUT WHERE WE'VE BEEN AND WHERE WE'RE GOING. SO I'M GOING TO START WITH WHERE WE HAVE BEEN. AND THESE ARE MFMU STUDIES OVER THE PAST 20 YEARS. I RECOGNIZE MANY OF YOU WILL NOT KNOW ALL OF THESE ACRONYMS OF THESE STUDIES, BUT WHAT I REALLY WANT TO EMPHASIZE HERE IS THAT THE MFMU NETWORK HAS COMPLETED STUDIES THAT HAVE BROUGHT INTERVENTIONS TO LI CLINICAL PRACTICE AND DEMONSTRATED THAT TREATMENTS ARE NOT EFFECTIVE AND STOPPED THEM FROM BEING USED IN CLINICAL PRACTICE. I'M NOT GOING TO GO THROUGH ALL OF THESE BECAUSE OF TIME, BUT JUST FOR A COUPLE OF EXAMPLES. WAY BACK AT THE BEGINNING THERE, 20 YEARS A YOU SEE THE HUAM STUDY. THIS WAS HOME UTERINE ACTIVITY MONITORING. FOR THOSE OBSTETRICIANS OUT THERE, WE OBVIOUSLY DON'T DO THAT ANYMORE. THAT'S SOMETHING THAT WAS STOPPED. FOX, UNFORTUNATELY THAT DIDN'T PAN OUT FOR BEING ABLE TO PREDICT BABIES THAT WERE ACIDOTIC. SCAN ON THE MIDDLE BOTTOM THERE WAS A STUDY LOOKING AT INJECTABLE PROGESTERONE TO PREVENT PRETERM BIRTH IN PEOPLE WITH A SHORT CERVIX. THAT DIDN'T WORK, WE'RE NOT DOING IT. THE LIST GOES ON FROM THERE IN TERMS OF THINGS THE MFMU HAS DEMONSTRATED ARE NOT EFFECTIVE AND HAVE NOT ENTERED CLINICAL PRACTICE. IN CONTRAST, THERE HAVE BEEN A NUMBER OF STUDIES THAT HAVE BROUGHT TREATMENTS TO PRACTICE. BEAM, YOU CAN SEE THERE, THIS IS THE MFMU TRIAL THAT DEMONSTRATED THE EFFICACY OF MAGNESIUM SULPHATE T. ALSO ARRIVE AND ALPS ARE MORE RECENT AND I THINK REALLY HAVE INFLUENCED CLINICAL PRACTICE. SO MY CLICKER IS RECONNECTING. OKAY. SO THESE ARE A NUMBER OF MFMU STUDIES BY YEAR STARTED. WHAT YOU CAN SEE IS BACK IN 1987, WE STARTED OUR FIRST CLINICAL TRIAL, AND THESE ARE CLINICAL TRIALS IN ORANGE AND OBSERVATIONAL STUDIES IN BROWN AND YOU CAN SEE OVER TIME WE'RE VERY ACTIVE IN CLINICAL TRIALS AND OBSERVATIONAL STUDIES THROUGHOUT THE TIME THE NETWORK HAS EXISTED. SO WHERE HAVE WE BEEN? HOPEFULLY I'VE CONVINCED YOU EVE DONE LARGE MULTICENTER RANDOMIZED TRIALS AND RIGOROUS OBSERVATIONAL STUDIES. WE'VE LEVERAGED ESTABLISHED RESEARCH INFRASTRUCTURE AND EXISTING COLLABORATIONS AND HOPEFULLY HAVE EXAMINED MEANINGFUL END POINT FOR CLINICAL CARE, AND I THINK HAVE PROVIDED TRUSTWORTHY RESULTS TO THE SCIENTIFIC AND CLINICAL COMMUNITY THAT WE CAN THEN INTEGRATE CLINICAL PRACTICE. I'M GOING TO TAKE A FEW MOMENTS TO HIGHLIGHT A COUPLE OF RECENT MFMU STUDIES BECAUSE I THINK THEY REALLY EXEMPLIFY WHAT THE NETWORK CAN DO FOR CLINICAL OBSTETRICS. THE FIRST IS THE ANTENATAL LATE PRETERM STUDIES TRIAL PUBLISHED IN THE NEW ENGLAND JOURNAL OF MEDICINE. THIS IS AN EXAMPLE OF HOW THE MFMU IS CHANGING OBSTETRIC PRACTICE. THIS WAS AN RCT OF PLACEBO OR STEROIDS IN LATE PRETERM NEONATES, 34 WEEKS ZERO DAYS TO 36 WEEKS FIVE DAYS. THE PRIMARY OUTCOME WAS A NEONATAL COMPOSITE RESPIRATORY OUT COME OR PERINATAL DEATH WITHIN 72 HOURS OF DELIVERY. WHAT WE FOUND IS THAT 11.6% OF THOSE WHO WERE EXPOSED TO THE BETAMETHASONE AND 14.4% OF PLA PLACEBO GROUP HAD PRIMARY OUTCOME, DEMONSTRATING GIVING STEROIDS IN THE LATE PRETERM REDUCED RISK OF THIS OUT COME. SINCE ALPS WAS PUBLISHED, IT'S HAD 403 CITATIONS. IT'S BEEN INCORPORATED INTO OFFICIAL GHIE DANCE FROM THE AMERICAN COLLEGE OF OB-GYNEDs AND THE SOCIETY FOR MATERNAL FETAL MEDICINE AND NOW WE GIVE CONSIDERATION TO BIOMETHASONE. WE JUST RECENTLY COMPLEATED ENROLLMENT AND HOPEFULLY RESULTS WILL BE FORTHCOMING AS I KNOW MANY PEOPLE ARE INTERESTED IN -- WE SEE SHORT TERM BENEFIT BUT WHAT ARE THE LONG TERM RAMIFICATIONS? ANOTHER STUDY THAT I JUST WANTED TO HIGHLIGHT BRIEFLY BECAUSE IT'S RECENT OVER THE PAST DECADE, IS THE MFMU ARRIVE TRIAL. THIS STUDY WAS PUBLISHED ALSO IN THE NEW ENGLAND JOURNAL OF MEDICINE, AND AGAIN THIS IS ANOTHER EXAMPLE OF THE MFMU CHANGING OBSTETRIC PRACTICE. THIS WAS AN RCT OF ELECTIVE INDUCTION OF LABOR AT 39 WEEKS GESTATION VERSUS EXPECTANT MANAGEMENT AMONG NULLIPAROUS RISK PATIENTS. THIS REALLY CHALLENGED O OBSTETC DOGMA, ARE WE'VE BEEN TELLING PEOPLE YOU SHOULDN'T BE INDUCED IT INCREASES RISK OF CESAREAN DELIVERY, AND IS THAT TRUE AND CAN WE BENEFIT NEONATES WITH EARLIER INDUCTION? THE PRIMARY OUTCOME OF THE ARRIVE TRIAL WAS PERINATAL DEATH OR SEVERE NEONATAL COMPLICATIONS. THIS WAS FOUND IN 4.3% OF THE INDUCTION GROUP AND 5.4% OF THE EXPECTANT MANAGEMENT GROUP, DEMONSTRATING THERE WAS NO DIFFERENCE IN NEONATAL OUTCOME. WE ALSO LOOKED AT THE MAIN SECONDARY OUTCOME IN CESAREAN DELIVERY, PRESENT IN 18.6% OF THE INDUCTION GROUP AND 22.2% OF THE EXPECTANT MANAGEMENT DEMONSTRATING CESAREAN DELIVERY WAS ACTUALLY REDUCED WHEN THEY UNDERWENT INDUCTION AT -- WEEKS. THIS WAS A VERY IMPORTANT FINDING. SINCE THE ARRIVE TRIAL WAS PUBLISHED IT'S HAD 484 CITATIONS, AND HAS ALSO BEEN INCORPORATED INTO OFFICIAL GUIDANCE FROM ACOG AND SMFM. REALLY WHAT WE'VE SEEN IS IMPLEMENTATION OF ELECTIVE INDUCTION OF LABOR AT 39 WEEKS ACROSS THE UNITED STATES, AND GLOBALLY. AND REALLY THIS RESULTS IN EXPANSION OF OPTIONS FOR PREGNANT INDIVIDUALS REGARDING THEIR DELIVERY TIMING PREFERENCES. THIS ALLOWS PEOPLE TO SAY, YOU KNOW, YES, I DO WANT TO BE INDUCED AND FOR US NOT TO SAY, WELL, THAT'S GOING TO INCREASE YOUR RATE OF C-SECTION. IN FACT, IT'S PROBABLY QUITE THE OPPOSITE. DR. BIANCHI, WHEN SHE ASKED ME TO SPEAK TODAY, ASKED ME ALSO TO PLEASE ADDRESS THE MFMU GRAVID STUDY. THIS IS THE GESTATIONAL RESEARCH ASSESSMENTS OF COVID-19 IN PREGNANCY. AND THIS IS AN EXAMPLE OF THE MFMU BEING ABLE TO RESPOND RAPIDLY TO THE SCIENTIFIC COMMUNITY'S NEEDS. SO IN IN CASE WE'RE RESPONDING TO THE COVID-19 PANDEMIC. GRAVID OVERALL INCLUDED 35 HOSPITAL SITES AMONG THE 12 MFMU CENTERS. IN TOTAL, OUR PERINATAL RESEARCH TEAM ABSTRACTED OVER 25,000 MEDICAL RECORDS, IN ORDER TO GET THE DATA FOR THE STUDY. WE LOOKED AT BOTH DELIVERIES IN 2020 AND 2019. IN 2020, THE DELIVERIES WERE CASES OF CONFIRMED COVID OR POSITIVE SARS-COV-2 TESTING IN OVER 4,000 INDIVIDUALS, AND THEY'RE COMPARED TO RANDOM DELIVERY, 11,752 OF THEM. WE ALSO ABSTRACTED DATA FOR 2019 RANDOM DELIVERIES, AND THAT WAS ANOTHER 9,709 INDIVIDUALS, AND THAT WAS ULTIMATELY TO BE ABLE TO COMPARE PEOPLE WHO DELIVERED IN THE PANDEMIC TO THOSE WHO DELIVERED PRIOR TO THE PANDEMIC. THE FIRST AIM OF GRAVID WAS TO LOOK AT THE ASSOCIATION BETWEEN SARS-COV-2 INFECTION AND SERIOUS MATERNAL MORBIDITY AND MORTALITY FROM OBSTETRIC COMPLICATIONS. THIS PAPER WAS PUBLISHED IN JAMA. THAT PAPER WAS A RETROSPECTIVE COHORT STUDY OF 17 HOSPITALS PARTICIPATING IN THE NICHD MATERNAL-FETAL NETWORK AND THIS IS ONLY 17 OF THE TOTAL SITES BECAUSE WE WERE ONLY COMPARING THOSE WHO ALSO PARTICIPATED IN THE RANDOM DELIVERY PORTION OF THIS PROTOCOL. SO WE WANTED TO COMPARE PEOPLE WHO DELIVERED AT HOSPITALS -- AT THE SAME HOSPITALLING RATHER THAN INCHOSPITALS RATHER THANIN. THIS INCLUDED 14,100 FOR PATIENTS WHO DELIVERED FROM DECEMBER TO MARCH OF 2020. 2,352 OF THEM HAD SARS-COV-2 INFECTION. OUR PRIMARY OUTCOME WAS MATERNAL DEATH OR SERIOUS MORBIDITY FROM COMMON PREGNANCY COMPLICATIONS INCLUDING HYPERTENSIVE DISORDERS OF PREGNANCY, POSTPARTUM HEMORRHAGE, AND INFECTIONS OVER SARS-COV-2, AND I THINK IMPORTANTLY, THESE AREN'T JUST HAVING A HYPERTENSIVE DISORDER OF PREGNANCY. IT MEANS HAVING REALLY SIGNIFICANT MORBIDITY FROM A HYPERTENSIVE DISORDER OF PREGNANCY, SO PROGRESSION TO ECLAMPSIA, NEEDING I.V. HYPERTENSIVES. OUR HYPOTHESIS IS THESE STATES WOULD PROGRESS FURTHER BECAUSE THEY WOULDN'T GET TO THE HOSPITAL OR THERE WERE DELAYS IN THEIR CARE. WHAT WE FOUND IS THAT PEOPLE WHO HAD SARS-COV-2 DID HAVE A HIGHER RISK OF COMPOSITE DEATH OR SERIOUS MORBIDITY. WITH AN ADJUSTED RELATIVE RISK OF 1.41 OR 40% HIGHER RISK AMONG THOSE WITH SARS-COV-2 INFECTION. WHAT WE ALSO FOUND WAS THAT THIS WAS REALLY DRIVEN BY THE HYPERTENSIVE DISORDERS OF PREGNANCY AND INFECTIONS OTHER THAN SARS-COV-2, NOT REALLY THE POSTPARTUM HEMORRHAGE COMPONENT OF THE EXOS SIT. COMPOSITE. BUT I THINK PERHAPS MOST IMPORTANTLY IS THAT WE STRATIFY BY SEVERITY OF INFECTION. AND THIS WAS PLANNED AND IT WAS SOMETHING THAT WE WERE ABLE TO DO BECAUSE WE WERE ACTUALLY ABSTRACTING THESE MEDICAL RECORDS BY HAND AND GOING IN AND REALLY UNDERSTANDING THE DETAILS OF THESE SARS-COV-2 INFECTIONS AND COVID-19 PROCESSES. AND WHEN WE DID THAT, WHAT WE FOUND IS THAT ADVERSE OUTCOMES WERE REALLY AMONG THOSE WITH MODERATE OR HIGHER DISEASE SEVERITY, EXCEPT HYPERTENSIVE DISORDERS OF PREGNANCY, WHICH WE ALSO SAW WAS INCREASED EVEN WITH THOSE WHO HAD MORE MILD DISEASE. BUT WHAT WE COULD SAY FROM THIS IS THAT WE NEED TO PREVENT PROGRESSION OF HIGHER DISEASE SEVERITY THROUGH VACCINATION, AND TREATMENTS FOR COVID-19. AND THIS HAS BEEN SOMETHING THAT'S BEEN REALLY IMPORTANT TO PREGNANT INDIVIDUALS. IN HTHIS HAS BEEN A PRESSING ISE THROUGHOUT THE PANDEMIC, IS THAT PREGNANT INDIVIDUALS HAVE NOT BEEN IN TRIALS AND HAVEN'T RECEIVED THE TREATMENTS INDICATED FOR THEM SO BEING ABLE TO SAY THAT WE CAN PREVENT THIS PROGRESSION TO HIGHER DISEASE SEVERITY, WITH HE CAN PREVENT THESE OTHER COMP COMPLICATIONS R MOMS AND NEONATES WAS REALLY CRITICAL AND ALLOWED US TO MOVE FORWARD ON THAT MESSAGING DURING THE PANDEMIC TO PREGNANT PEOPLE AND HEALTHCARE PRACTITIONERS. THIS CLICKER IS RECONNECTING AGAIN. SORRY. IT'S A SEPARATE SYSTEM. OKAY. SO WHERE ARE WE GOING? I THINK THAT I'VE COVERED SOME OF WHERE WE'RE GOING. WE NEED TO PUBLISH SOME OF OUR OTHER RECENTLY COMPLETED STUDIES, THOUGH. WE HAVE TRANEXAMIW ACID FOR PREVENTION OF OBSTETRICAL HEMORRHAGE, PUBLICATION PENDING. WE HAVE AN OBSERVATIONAL STUDY OF HEPATITIS C VIRUS IN PREGNANCY, AND A PRESCRIPTION AFTER CESAREAN TRIAL OR PACT STUDY WHICH LOOKED AT SHARED KE SITION MAKING AT THE TIME OF HOSPITAL DISCHARGE. THE ANTENATAL LATE PRETERM STEROIDS I MENTIONED AND THE CYTOMEGLOVIRUS TRIAL FOLLOW-UP. NOW THAT WASN'T FOUND TO BE EFFECTIVE BUT WE'RE STILL INTERESTED IN WHAT HAPPENED LONG TERM TO THOSE KIDS WHO RECEIVED EXPOSURE DURING PREGNANCY. WE ALSO NEED TO COMPLETE OUR ONGOING TRIALS. SO IN THE EXISTING NETWORK, WE'RE STILL ENROLLING IN THREE TRIALS. ONE IS THE RANDOMIZED TRIAL OF PESSARY AND PROGESTERONE FOR PRETERM PREVENTION IN TWIN GESTATION WITH A SHORT CERVIX, SO LOOKING AT THESE INTERVENTIONS FOR PREVENTING PRETERM BIRTH. WE'RE LOOKING AT A RANDOMIZED TRIAL OF CONTINUOUS POSITIVE AIRWAY PRESSURE FOR SLEEP APNEA IN PREGNANCY. AND WE'RE DOING A POST-ACUTE SEQUELAE OF SARS-COV-2 STUDY IN PREGNANT PATIENTS AND THEIR OFFSPRING. I'M GOING TO COVER THAT IN SOME MORE DETAIL. SO BECAUSE WE WERE ABLE TO DO THE GRAVID STUDY, WE WERE ALSO ABLE TO BE FUNDED TO BE PART OF THE TRANS-NIH RECOVER INITIATIVE. THE RECOVER INITIATIVE IS RESEARCHING COVID TO ENHANCE RECOVERY. AND THE MFMU IS PARTICIPATING IN THIS AS PART OF THE PREGNANCY COHORT OF RECOVER. AND FOR THAT STUDY, WE'RE TRYING TO ENROLL 15 HYUNDAI ADDS 1500W THEM LONGITUDINALLY, SO LOOKING AT LONG COVID SIGNS, SYMPTOMS AND REALLY END OF PHENOTYPING FOR LONG COVID AMONG THE MOTHERS WHO HAD SARS-COV-2 IN PREGNANCY. FOR THE OFFSPRING, WE'RE FOLLOWING THEM AND EVALUATING A VARIETY OF NEURODEVELOPMENTAL MEASURES AND CARDIAC METABOLIC MEASURES TO SEE IF EXPOSURE TO SARS-COV-2 IN UTERO RESULTS IN ADVERSE OUTCOMES IN CHILDHOOD. THERE'S ALSO COLLABORATIONS THAT THE MFMU IS BUILDING WITHTH IF NICHD NETWORK. WE JUST HAD A STEERING COMMITTEE MEETING LAST WEEK ACTUALLY, I WAS IN D.C. FOR THAT, AND THE IMPRINT INVESTIGATES CAME AND SPOKE TO US ABOUT HOW WE CAN COLLABORATE MOVING FORWARD AND REALLY LEVERAGE ALL OF THESE RESOURCES TO MOVE THE FIELD. WE'VE ALREADY BEEN COLLABORATING WITH THE NIH HELPING TO END ADDICTION LONG TERM OR HEAL INITIATIVE. THAT IS HOW WE DID THE PATCH STUDY OR THE CESAREAN TRIAL I JUST DISCUSSED, AND WITH THIS NEW RFA, THERE'S A FOCUS ON ALLOWING INVESTIGATORS OUTSIDE OF MFMU CENTERS TO BRING TRIALS TO THE MFMU THAT CAN THEN BE PERFORMED USING OUR INFRASTRUCTURE. SO THE IDEA IS REALLY THAT THE MFMU IS WORKING COOPERATIVELY WITH NICHD IN ORDER TO PROVIDE A RESEARCH INFRASTRUCTURE THAT WILL ALLOW FOR THE MOST INNOVATIVE AND EXCITING CLINICAL TRIALS TO MOST HIGHLY IMPACT OBSTETRIC PRACTICE. OF COURSE WE NEED TO CONTINUE TO WORK WITH COMMUNITIES AND PATIENTS TO MAKE SURE THE SCIENCE IS ALIGNING WITH WHAT IS NEEDED BY PREGNANT INDIVIDUALS IN THE COMMUNITY. SO WHERE ARE WE GOING? WE'RE GOING TO CONTINUE TO FUNCTION WITH A COOPERATIVE AGREEMENT MOVING FORWARD WITH NICHD. WE'RE GOING TO MAINTAIN RESEARCH INFRASTRUCTURE TO CONDUCT MULTICENTER, GENERALIZABLE PERINATAL TRIALS WITH CLINICALLY IMPORTANT OUTCOMES. WE'RE GOING TO CONTINUE TO PROVIDE RIGOROUS EVIDENCE TO GUIDE OBSTETRIC PRACTICE AND RESPOND TO THE NEEDS OF THE HEALTHCARE COMMUNITY. WE REALLY WANT TO ULTIMATELY IMPROVE PERINATAL OUTCOMES. THIS COMES WITH A HUGE, HUGE THANK YOU TO NICHD FOR FUNDING THE MFMU NETWORK SINCE 1986. HOPEFULLY I'VE CONVINCED YOU THAT'S A WISE INVESTMENT AND WE'VE BEEN ABLE TO REALLY IMPACT CLINICAL PRACTICE. OF COURSE IT'S AN HONOR TO BE HERE PRESENTING ON BEHALF OF ALL P.I.s IN THE NETWORK. THE NURSE COORDINATORS REALLY HELP THE PROGRAM RUN AND THEIR RESEARCH TEAMS. GEORGE WASHINGTON UNIVERSITY DATA ANAL CIRCLES AND OF COURSE PATIENTS WHO PARTICIPATE IN RESEARCH TO IMPROVE OUTCOMES FOR PREGNANT PEOPLE AND THEIR CHILDREN. THANK YOU SO MUCH FOR THE OPPORTUNITY TO PRESENT TODAY. IT WAS TRULY AN HONOR. >> >>DR. METZ, LET ME THANK YOU IN RETURN. OUR FINAL SPEAKER FOR THIS PANEL IS DR. FASIL TEKOLA-AYELE, EPIDEMIOLOGY BRANCH, DIVISION OF POPULATION HEALTH RESEARCH AT NICHD. HE LEADS A RESEARCH PROGRAM FOCUSED ON GENETIC AND EPIGENETIC AND TRANSCRIPTOMIC MECHANISMS OF LINKS BETWEEN FETAL GROWTH AND CARDIOMETABOLIC DISEASE RISK IN DIVERSE ANCESTRAL POPULATIONS. HIS INTERESTS ALSO INCLUDE OXIDATIVE DNA DAMAGE MARKERS AND EPIGENETIC AGENT OF THE PLACENTA, CHILDHOOD OBESITY RATES. PLEASE JOIN ME IN WELCOMING DR. TEKOLA-AYELE. >>THANK YOU SO MUCH, CAR LINE, FOR THE KIND INTRODUCTION. I WOULD LIKE TO SAY THANK YOU TO DR. BIANCHI FOR INVITING ME TO BE PART OF THIS EXCITING SESSION. SO I'LL GO AHEAD WITH MY PRESENTATION. SO MY TALK TODAY WILL FOCUS ON WHAT WE LEARNED SO FAR ABOUT FETAL GROWTH, BY LEVERAGING GENETIC INFORMATION FROM POPULATIONS WITH DIVERSE ANCESTRAL BACKGROUND AND ALSO FROM THE PLACENTA. WHY DIVERSE ANCESTRAL POPULATION IN RE?ECH I'D LIKE TO DEMONSTRATE THAT DIVERSE ANCESTRY POPULATIONS CAN GENERATE SCIENTIFIC DISCOVERY, CAUSE OF MECHANISMS AND ENSURING THAT INSIGHT -- AND WHY THE PLACENTA GENOME IN THIS CONTEXT, THE PLACENTA AS YOU KNOW BRIDGES THE MATERNAL AND FETAL SYSTEM, AND ITS FUNCTIONS ARE CRITICAL FOR FETAL GROWTH AND MAINTENANCE OF HEALTHY PREGNANCY. I WILL HIGHLIGHT THAT THE MR. 16 TAPLACENTA HAS VALUABLE GENOMIC INFORMATION TO ALLOW US TO LEARN MORE ABOUT GROWTH VARIATION, BIOMARKERS OF METABOLIC HEALTH WHICH MAY HAVE EFFECT ON CHILDREN AND ADOLESCENTS AS WELL. NON-EUROPEANS ARE UNDER STUDIED IN GENOMIC RESEARCH. DESPITE THE MILLIONS OF STUDY PARTICIPANTS IN GENOMIC RESEARCH SO FAR. FOR EXAMPLE, ONLY 2% OF AFRICAN AND 1% OF HISPANIC POPULATIONS WERE INCLUDED IN PREVIOUS GENOMIC STUDIES. THE PLACENTA IS ALSO NOT INCLUDED IN LARGE SCALE FUNCTIONAL GENOMICS DATABASE. HERE YOU SEE MORE THAN 50 TISSUES INCLUDED IN THE GTEX, BUT THE PLACENTA IS STILL MISSING. OKAY. FETAL GROWTH IS CRITICAL FOR HEALTH ACROSS THE LIFESPAN. STUDIES HAVE FOUND CONSISTENT ASSOCIATIONS BETWEEN FETAL GROWTH AND CONDITIONS THAT CONTRIBUTE TO DISEASE AND DEATH. THEREFORE UNDERSTANDING THE MECHANISMS OF EARLY GROWTH RECOGNITION CAN HAVE TRANSLATIONAL VALUES FOR HEALTHY PREGNANCY AND EVEN BEYOND THAT FOR SUBSEQUENT HEALTH OF CHILDREN AND MOTHERS. AS A POPULATION LABEL FETAL GROWTH SHOWS VARIATIONS AMONG GEOGRAPHIC REGIONS AND INDIVIDUALS AND THIS HAS BEEN DEMONSTRATED BY TWO STUDIES LED BY THE -- AND THE NICHD FETAL GROWTH STUDIES IN THE U.S. WHEN IT COMES TO GENETICS, THE CONTRIBUTION OF GENETICS ON FETAL GROWTH IS SUBSTANTIAL. IT ALSO VARIES THROUGHOUT GESTATION. THIS FIGURE IS FROM ONE OF OUR STUDIES IN WHICH WE ESTIMATED THE GENETIC CONTRIBUTION TO FETAL GROWTH. ON THE HORIZONTAL AXIS, YOU SEE GESTATIONAL WEEK, AND ON THE VERTICAL AXIS IS THE PERCENTAGE OF VARIATION IN FETAL GROWTH EXPLAINED BY GENETIC FACTORS. AS YOU CAN CLEARLY SEE, GENETIC CONTRIBUTIONS STEADILY RISE, PEAKING AROUND LATE SECOND TRIMESTER OF PREGNANCY. THE IMPLICATION IS THAT GENETIC STUDIES -- AT BIRTH HAVE AT LEAST SOME -- FACTORS THAT HAVE GESTATIONAL -- AND IT SPEAKS TO THE NEED FOR GENETIC STUDIES -- FETAL GROWTH TRAJECTORY. NOW THE QUESTION IS HOW DO WE CONDUCT GENETIC EPIDEMIOLOGY STUDIES TO IDENTIFY THESE GENETIC VARIANTS -- GESTATION AND VARIABLE TO DIVERSE POPULATIONS. OBVIOUSLY WE NEED GENOMIC DATA FROM HUMAN POPULATIONS, BUT THIS IS COMPLEX. AT LEAST TWO ANCESTRAL COMPONENTS. THIS HAS IMPORTANT IMPLICATIONS. ONE, BECAUSE HUMAN POPULATION GENETIC VARIATION IS COMPLEX AND HETEROGENEOUS RACE/ETHNICITY, RESIDENCE CANNOT ADEQUATELY CAPTURE VARIATIONS WE SEE IN GENETIC ANCESTRY. SECOND, I MENTIONED EARLIER THAT A HUGE MAJORITY OF LARGE SCALE GENOMIC STUDIES SO FAR -- WE --N YOU USE GENETIC RISK VARIANTS DISCOVERED IN RESEARCH PARTICIPANTS WITH EUROPEAN AN SES PREBACKGROUND ONLY, THIS CAN LIMIT CLINICAL AND POPULATION HEALTH BENEFITS OF GENOMIC RESEARCH. IN TERMS OF STUDIES, IT HAS IMPORTANT IMPLICATIONS IN PREDICTING THE LINK BETWEEN GENETIC FACTORS AND FETAL GROWTH ACROSS POPULATIONS. NEXT I'LL GIVE ONE EXAMPLE FROM OUR WORK TO ILLUSTRATE THIS LAST POINT. HERE OUR GOAL WAS TO ASSESS WHETHER MATERNAL DIABETES POLYGENIC RISK IN EUROPEANS PREDICT FETAL WEIGHT ACROSS ANCESTRAL GROUPS. THESE WERE OBTAINED FROM PREVIOUS GENOME-WIDE ASSOCIATION STUDIES INVOLVING EUROPEAN ANCESTRY POPULATIONS PREDOMINANTLY ONLY. WHAT WE FOUND AMERICANS IN THE COHORT FIRST FROM OTHER GROUPS. IN NEW YORK AND AMERICA, WE FOUND THERE IS A DIFFERENCE BETWEEN WOMEN WITH HIGH AND LOW DIABETES GENETIC RISK. THIS DIFFERENCE BEGINS AS EARLY AS 23 WEEKS OF GESTATION, AND INDEPENDENT OF MATERNAL GLYCEMIC STATUS. HOWEVER -- AFRICAN AMERICAN AND HISPANIC AMERICANS IN THE SAME COHORT. GENETIC RISK MARKERS OBTAINED FROM STUDIES THAT INCLUDE EUROPEAN ANCESTRY PEOPLE ONLY INCLUDING THEIR STANDING IN PREDICTING FETAL GROWTH IN OTHER ANCESTRAL POPULATIONS. SO IS IT POSSIBLE THAT SOME GENETIC VARIANTS THAT UNDERLIE FETAL GROWTH ALSO -- WITH ANCESTRY. AS I MENTIONED EARLIER MOST POPULATIONS HAVE A MIX OF ANCESTRAL BACKGROUND SO WE WANTED TO TEST WHETHER THERE ARE FETAL GROWTH -- WOMEN BELONGING TO THE SAME RISK -- COMPOSITION. WE DID THESE IN THE NICHD FETAL GROWTH STUDIES COURT. THE PERSON WITH -- AND HISPANIC ETHNICITY IN THE COHORT, EACH VERTICAL LINE REPRESENTS ONE SAMPLE. AND THE DIFFERENT COLORS REPRESENT ANCESTRY DERIVED USING GENETIC MARKERS. AFRICAN AMERICANS ARE BLUE AND GREEN COLORS REPRESENTING DIFFERENT PERCENTAGE OF AFRICAN AND EUROPEAN ANCESTRIES. HISPANICS HAVE THREE COLORS REPRESENTING THE POPULATION THAT ARE INDIGENOUS -- WE FOUND THE TRAJECTORY OF OVERALL GOALS AS WELL AS GROWTH -- SPECIFIC GESTATIONAL AGE VARIED ON THE PERSON AND GENOME. ALL WOMEN TO THE SAME -- BY RACE AND ETHNICITY. AS AN EXAMPLE, THE LONGER THE LENGTH OF THE FEMUR BONE, THE LOWER THE WEIGHT OF THE FETUS -- WEIGHT WAS HIGHER AND FEMUR LENGTH WAS SHORTER. THESE HIGHLIGHT GENETIC FACTORS THAT IMPACT GROWTH RELATED WITH GENETIC ANCESTRY. RECENTLY A MIX OF POPULATIONS HAVE GENOME STRUCTURES THAT ALSO FACILITATE IDENTIFICATION OF NOVEL GENOMIC RIDGES THAT ARE ASSOCIATE WITH AN OUTCOME. WHEN THAT SPECIFIC GENOMIC -- IN OUR STUDIES THE MIX OF ANCESTRY COMPOSITION OF -- WE WERE ABLE TO SUCCESSFULLY MAP SOMETHING PREVIOUSLY UNKNOWN ANCESTRY OF LOCI ASSOCIATED WITH FETAL GROWTH MEASURES. 10 -- AND THREE WERE AMERINDIGENOUS ANCESTRY. SOME OF THEM OVERLAP WITH -- IN TRANSCRIPTION FACTORS INDICATED IN POSTNATAL DEVELOPMENT IN MICE. OVERALL, FINDINGS SUGGEST THAT GENETIC REGULATION OF -- PATHWAYS THAT ARE RELEVANT FOR GROWTH AND DEVELOPMENT OF THE FETUS ARE VERY ANCESTRY-DEPENDENT MANNER. ANOTHER IMPORTANT -- IN DRIVING RESEARCH, BY HELPING US REFINE -- THE GROUP OF VARIANTS AS A BLOCK FROM A SINGLE ANCESTRAL PARENT USUALLY VARY AMONG POPULATIONS. SO IF YOU STUDY EUROPEAN GENOME IT'S DIFFICULT TO DETERMINE BECAUSE THE LENGTH IS BIGGER. THE LENGTH OF THESE BLOCKS -- AFRICAN -- CREATING MORE CROSSOVER ADVANCE OVER GENERATIONS AND THIS SMALLER BLOCK OF AFEBLOCK OF AFRICAN GEO THE STUDY. SO I GIVE YOU ONE EXAMPLE, FIRST WE IDENTIFIED MATERNAL GENETIC VARIANT IN THE ITPR1 ASSOCIATED WITH LOWER FETAL WEIGHT IN THE LATE SECOND TRIMESTER/EARLY THIRD TRIMESTER OF PREGNANCY. SO THE INTERESTING PART IS, THIS VARIANT IS ASSOCIATED WITH WEIGHT ACROSS ALL ANCESTRIES BUT WE KNOW THAT THE VARIANT IS PRESENT IN A LONGER GENOMIC SEGMENT OF LONGER BASE PAIRS BUT AFRICAN -- 69 BASE PAIRS THAT HELP US FOCUS ON THE REGION BY MORE THAN 90% COMPARED TO THE EUROPEAN GENOME. THIS IS VERY USEFUL FOR TRANSLATIONAL STUDIES -- EVIDENCE. AS I SHOWED IN THE LAST EXAMPLE, IN GENERAL WE SEE SIMPLE GENETIC ASSOCIATIONS FROM PATHWAYS. THIS IS A MAJOR GAP IN UNDERSTANDING THE FUNCTIONAL CONSEQUENCE OF MOST GWAS VARIANCES LINKED WITH BIRTH WEIGHT. FOR MOST OF THEM, THEIR FUNCTIONAL MECHANISMS ARE KNOWN AND THE TARGET CAUSE OF THE GENE IS UNCLEAR. SO WE NEED ADDITIONAL INFORMATION AND WE HAVE THE PLACENTA. THE PLACENTA CONTAINS POWERFUL INFORMATION IN THE GENOME AND TRANSCRIPTOME THAT CAN BE HARNESSED TO PRIORITIZE CAUSAL GENETIC MECHANISMS AND TO IDENTIFY GENES UNDERLYING BIRTH WEIGHT VARIATION. IDENTIFYING THESE TARGET GENES IS IMPORTANT FOR STUDIES WHICH CAN HAVE CLINICAL AND POPULATION HEALTH BENEFITS IN THE FUTURE. IN A RECENT COLLABORATIVE EFFORT WE PUT TOGETHER DIFFERENT OMICS INFORMATION TO IDENTIFY POTENTIAL FUNCTIONAL -- FOR BIRTH WEIGHT. WE INTEGRATED FETAL GENOME PLUS EPIGENOME AND TRANSCRIPTOME. OUR GOAL WAS TO PRIORITIZE GENES WITH EFFECTS MEDIATED FOR THE PLACENTAL GENOME AND TRANSCRIPTOME. WE FOUND AN OVERWHELMING PROPORTION OF BIRTH WEIGHTS ALSO CONTROLLED PLACENTAL METHYLATION AND GENETIC EXPRESSION IN REGIONS. 58% OF VARIANTS SHOWS ASSOCIATION WITH METHYLATION AND 10% GENE EXPRESSION IN THE PLACENTA. BIRTH WEIGHT LOCI COMPARED TO GENOME WIDE, SUGGESTING EFFECT ON BIRTH WEIGHT ARE LIKELY TO BE MEDIATED -- ON THE PLACENTAL GENOME. AND THE GENES -- BROADLY ENRICHED IN SIGNALING PATHWAYS WHICH ARE CONSISTENT WITH THE VARIOUS FUNCTIONS OF THE PLACENTA DURING FETAL DEVELOPMENT. NEXT WE IMPLEMENTED -- THAT MODULATE THE EFFECT OF THE GENETIC VARIANTS ON BIRTH WEIGHTS WITH THE PLACENTA. IT'S LIKELY THAT TRANSCRIPTION IN PLACENTA MAY BE A MECHANISM OF PROTECT CONSISTENT WITH CAUSALITY AND THE GENES ARE IMPLEM KATEED IN EARLY DEVELOPMENT OF THE PLACENTA AND EMBRYO. OVERALL, THIS IS AN IMPORTANT ADVANCE DEMONSTRATING THE SIGNIFICANCE OF THE PLACENTA IN THESE TYPES OF RESEARCH, IN PARTICULAR IN FILL AGO MAJOR GAP IN INTERPRETING LOCI IN TRANSLATIONAL STUDIES. AGAIN THE PLACENTA IS ON -- BOTH GROWTH AND PHYSIOLOGICAL -- PROCESSES AND STUDIES HAVE SHOWN NORMAL AND PREMATURE AGING OF THE PLACENTA COME TO LOSS OF TISSUE GENERATING CAPACITY AND THE PREGNANCY COULD END UP WITH VARIOUS COMPLICATIONS. THE EPIGENETIC CLOCK IS A MAJOR ADVANCE. THIS CLOCK IS COMPUTED USING SELECTED METHYLATION SITES AND EPIGENETIC AGE ACCELERATION -- PLACENTA IS THE GESTATIONAL -- AND STUDIES HAVE SHOWN IN PLACENTA, EPIGENETIC ACCELERATION IS ASSOCIATED WITH FETAL GROWTH IN ONE OF OUR STUDIES AND WITH EARLY ONSET PREECLAMPSIA IN A PREVIOUS STUDY. SO THERE IS A POTENTIAL THAT PLACENTA CLOCKS CAN TRACK ANTECEDENTS OF AGING EARLY IN THE LIFE COURSE AND METHYLATION AGE HAS BECOME USEFUL IN IDENTIFYING MOLECULAR MARKS -- SOME OF WHICH MAY HAVE IMPLICATIONS FOR -- CHILD IN LATER LIFE. OUR STUDIES INCLUDING -- FOUND OUT MATERNAL CARDIOMETABOLIC -- INCLUDING AND BLOOD PRESSURE DURING PREGNANCY AND PSYCHOSOCIAL FACTORS INCLUDING DEPRESSIVE SYMPTOMS IN THE PLACENTA. THESE INCLUDE CHANGES IN THE PLACENTAL AGE CLOCK, METHYLATION CHANGES AS WELL AS GENE EXPRESSION CHANGES AT SPECIFIC LOCI. WHAT WE FOUND MUCH OF THE CHANGES WE IDENTIFIED ARE LOCATED IN -- AND FETAL DEVELOPMENT. INTERESTINGLY, WE ALSO OBSERVE THE OVERLAP WITH LOCI KNOWN FOR OTHER CHRONIC DISEASES SUCH AS DIABETES, FETAL HEART DEVELOPMENT AND CARDIOVASCULAR DISEASE, AND -- SUGGESTS THAT EPIGENETIC MECHANISMS OF THE PLACENTA MAY UNDERLIE -- BUT POTENTIALLY MARK LATER ONSET OF DISEASE. IT DEFINITELY REQUIRES FURTHER STUDIES TO BRING THE PLACENTAL AS A VALUABLE DYING NOS TIS SOURCE OF INFORMATION, ALSO FOR PREDICTING LONG TERM HEALTH OUTCOMES, POSSIBLY OFFERING US SOME PICTURE OF WHAT CAN BE DONE ABOUT PREVENTION. I WOULD LIKE TO END MY TALK WITH SOME DIRECTIONS MOVING FORWARD. ONE, THERE IS A NEED TO ADDRESS THE DIVERSITY GAP IN PERINATAL GENOMICS, WHICH IS CRITICAL TO ADDRESS HEALTH AND DISPARITIES ESPECIALLY WHEN GENOMICS BECOMES PART OF THE FUTURE. WITH ADDITIONAL OMICS, CLINICAL DATA. AND SECOND, CONTEXT SHOULD BE CONSIDERED WITH GENETIC VARIANTS IN THE ENVIRONMENT. AND THIRD, IT VERY IMPORTANT TO -- DISCOVER POPULATION -- COLLABORATION BETWEEN POPULATION-BASED RESEARCH -- WITH BASIC SCIENCE RESEARCH. AND FINALLY I'D LIKE TO SAY -- OF RESEARCH ON THE PLACENTA, LONGITUDINAL FOLLOW-UP AND BY INTEGRATING APPROACH WITH OMICS SUCH AS AGING -- AND OTHER PLACENTAL FUNCTION WITH OMICS. THAT'S THE END OF MY PRESENTATION BUT I'D LIKE TO TAKE THIS OPPORTUNITY TO THANK THE WONDERFUL TRAINEES THAT I'M WORKING WITH. I ALSO THANK THE NICHD TEAM AND COLLABORATORS OF NIH OUTSIDE. AND WITH THAT, I WOULD THANK YOU FOR YOUR ATTENTION AND HOPE TO TAKE QUESTIONS LATER IN THE SESSION. THANK YOU. >>THANK YOU SO MUCH, DR. TEKOLA-AYELE, AND TO ALL OF OUR SPEAKERS FOR THIS EXCELLENT SESSION. WE CAN OPEN IT UP NOW FOR A Q & A SESSION. I WOULD ENCOURAGE ALL OF YOU TO EMAIL YOUR QUESTIONS FOR ANY OF OUR PANEL MEMBERS TO NICHDPRESS@MAIL.NIH.GOV. WE'LL GET TO AS MANY OF THEM AS WE CAN DURING THE REMAINDER OF OUR SESSION. SO ONE QUESTION STARTING OUT IS FOR DR. HARDEMAN. CAN YOU CHARACTERIZE RECEIPT SEPTION OF YOUR RESEARCH BY THE RECEPTION, HAS THERE BEEN ANY PUSHBACK ON YOUR WORK GIVEN THE CURRENT POLARIZATION WE SEE IN SOCIETY? >>THAT'S AN EXCELLENT QUESTION, AND ONE I OFTEN RECEIVE. SO I WOULD SAY YES, THERE IS ALWAYS, ALWAYS GOING TO BE PUSHBACK IN THIS WORK. I THINK IT'S THE NATURE OF THE WORK AND THE SORT OF POLITICAL AND POLARIZED SOCIETY WE LIVE IN. IT'S SORT OF THE REALITY. THE WAY I THINK ABOUT IT AND THE WAY I APPROACH THE WORK IS I OFTEN LEAD WITH THE DATA AND THE EMPIRICAL EVIDENCE THAT SUPPORTS SORT OF WHAT THE PATH FORWARD SHOULD LOOK LIKE. SO I TRULY BELIEVE THAT AN EVIDENCE-BASED APPROACH TO INFORMING POLICY IS INCREDIBLY IMPORTANT, AND I THINK HAVING THAT ROBUST SPACE AND BEING ABLE TO SAY THIS WORK, THIS RESEARCH HAS BEEN VETTED IN A VARIETY OF DIFFERENT WAYS AND PEER REVIEWED CERTAINLY SORT OF HELPS TO MOVE THE CONVERSATION ALONG. I THINK WE ALSO HAVE TO BE INCREDIBLY THOUGHTFUL AND STRATEGIC ABOUT HOW -- I'M ALWAYS THINKING ABOUT THE AUDIENCE I'M PRESENTING WITHIN. YESTERDAY I HAD THE PLEASURE OF PRESENTING AT THE SIDM, WHICH I'M MISREMEMBERING THE ACRONYM NOW, BUT IT'S FOLKS DOING WORK IN THE DIAGNOSTIC SPACE AND THINKING ABOUT THE INTERSECTIONS OF OUR DIAGNOSTIC ERROR CONTRIBUTES TO MATERNAL DEATHS AND MATERNAL MORBIDITY AND THEY ASKED THE SAME QUESTION, HOW DO YOU APPROACH THIS WORK I AND THE PRESENTATIONS OF THIS WORK IN AUDIENCES THAT ARE SORT OF LESS RECEPTIVE. AND WE TALKED A LOT ABOUT HOW TO USE LANGUAGE AND NARRATIVE AND STORIES AND DATA TO LIFT UP THE FINDINGS. THERE'S ALWAYS GOING TO BE PUSHBACK, AND I ALSO AM VERY INTENTIONAL ABOUT SORT OF FRAMING WHO MY AUDIENCE IS AND THE FACT THAT I CAN'T BRING EVERYBODY ALONG BUT THERE'S FOLKS THAT ARE SORT OF SITTING IN THE MIDDLE THAT WE CAN BRING ALONG AND THINKING ABOUT THIS WORK AND REALLY TAILORING MESSAGING TO THAT GROUP AS WE WORK TO BUILD SORT OF A CRITICAL MASS IN THE SPACE OF REPRODUCTIVE HEALTH EQUITY. >>THANK YOU. THANK YOU SO MUCH. ONE OTHER QUESTION FOR DR. METZ. YOU'VE ALLUDED TO THIS. INCLUDING PREGNANT WOMEN IN CLINICAL RESEARCH, IS RECEIVING MORE ATTENTION, BUT HOW FAR ARE YOU SEEING THIS GO IN YOUR OWN WORK, AND WHAT MORE DO YOU THINK NEEDS TO BE DONE TO SORT OF BREAK DOWN THIS BARRIER TO EVIDENCE-BASED PRACTICE IN OBSTETRICS? >>THANK YOU FOR THAT QUESTION. IT'S A BIG QUESTION, RIGHT, HOW CAN WE CONTINUE TO REALLY PROMOTE THE IDEA THAT PREGNANT INDIVIDUALS NEED TO BE INCLUDED IN CLINICAL TRIALS AND THE IMPORTANCE OF THAT MESSAGE. I'M HOPING WE CAN REALLY LEVERAGE WHAT WHAT'S HAPPENED IE PANDEMIC TO REALLY DRAW MORE ATTENTION TO THIS IMPORTANT ISSUE. I MEAN, WE KNOW THAT BECAUSE PREGNANT PEOPLE WEREN'T INCLUDED IN TRIALS EARLY ON IN THE PANDEMIC, WE REALLY WEREN'T ABLE TO THEN SAY TO THEM THAT THESE VACCINES OR THESE TREATMENTS ARE SAFE AND EFFECTIVE FOR THEM TO USE DURING PREGNANCY. THAT, I THINK, REALLY SET US BACK AND I THINK WE'RE GOING TO SEE THE RAMIFICATIONS OF THAT DOWN THE ROAD AS WE START TO LOOK MORE AT MATERNAL MORBIDITY AND MATERNAL MORTALITY RELATED TO THE PANDEMIC, AND SO REALLY PUSHING THAT MESSAGE THAT WE'RE NOT PROTECTING ANYONE BY NOT INCLUDING PREGNANT PEOPLE IN THESE TRIALS AND THAT IT REALLY NEEDS TO BE A POPULATION THAT IS INCLUDED EARLY ON, AND I THINK WE CERTAINLY HAVE A LARGE INVESTIGATOR BASE WHO REALLY BELIEVES IN THAT, AND WE HAVE SEEN SOME OF THAT START TO SHIFT. WE DO HAVE TRIALS THAT OF COURSE THE NICHD MFMU IS ENROLLING PREGNANT PEOPLE IN TRIALS, THAT'S WHAT WE DO. SO I THINK IT'S AN OPPORTUNITY FOR THE MFMU, OTHER INVESTIGATORS WHO DO CLINICAL TRIALS AND PREGNANT PEOPLE TO REALLY CONTINUE TO PUSH OUT THIS MESSAGE ABOUT THE IMPORTANCE OF THIS. AND I THINK REALISTICALLY IT'S GOING TO TAKE SOME TIME TO MOVE THAT NEEDLE, BUT I THINK PEOPLE ARE REALLY COMMIT TODAY THAT AND I THINK IF WE CAN LOOK AT THE SHINING LIGHT OF THE PANDEMIC, THERE'S NOT A LOT OF THEM BUT PERHAPS THIS CAN BE ONE OF THEM THAT WE CAN REALLY USE WHAT WE FOUND DURING THIS TIME TO REALLY PUSH THAT MESSAGE AND THE IMPORTANCE OF THE MESSAGE THAT PREGNANT PEOPLE NEED TO BE ENROLLED IN TRIALS. >>YEAH, YEAH, SO IMPORTANT. THANK YOU. WE HAVE ANOTHER QUESTION FOR DR. VIEWERS THANK YOU AND ESPECIALLY FOR YOUR ADAPTATION TO NOT HAVING SLIDES FOR YOUR PRESENTATION AT THE LAST MINUTE. A VIEWER WANTED TO ASK IF YOU CAN EXPAND ON YOUR BRIEF COMMENTS ON THE MEASUREMENT OF STRUCTURAL RACISM. BEYOND JUST ASKING PARTICIPANTS FOR THEIR RACE OR GENDER OR ETHNICITY OR EVEN GEOCODING, HOW CAN WE DO BETTER TO IDENTIFY THESE STRUCTURES IN THE RESEARCH THAT WILL ULTIMATELY HELP PROMOTE POSITIVE CHANGE? >>THANK YOU SO MUCH FOR ASKING THAT QUESTION BECAUSE IT'S EXACTLY SORT OF THE CRUX OF WHAT I WANTED TO DIG INTO. SO I DO WANT TO POINT FOLKS TO A HEALTH AFFAIRS ARTICLE THAT MY TEAM PUBLISHED EARLIER THIS YEAR, THAT SORT OF HELPS WALK THROUGH HOW WE SHOULD BE THINKING ABOUT THE MEASUREMENT OF STRUCTURAL RACISM. SO I'M NOT PUTTING THAT OUT THERE FOR SELF-PROMOTION BUT BECAUSE I THINK THAT IT'S A NICE SORT OF GUIDE OR FRAMEWORK APPROACHING THE WORK. SO WE HIGHLIGHT THE HISTORY OF RACISM IN THE UNITED STATES THAT AFFECTS WAYS OUR COUNTRY SHOULD BE APPROACHING AND THE RESEARCH COMMUNITY SHOULD BE APPROACHING MET SURE OF STRUCTURAL RACISM, SO THAT HISTORICAL PIECE AND COLLECTING AND CREATING A REPOSITORY OF HISTORICAL DATA. SO THINGS LIKE LYNCHING, RIGHTS, AND OLDER FORMS OF POLICING AND POLICE VIOLENCE ARE INCREDIBLY IMPORTANT DATA POINTS AND VARIABLES. WE ALSO HIGHLIGHT THE ROLE THAT GEOGRAPHICAL CONTEXT PLAYS WE NEED TO BE THINKING REALLY CREATIVELY ABOUT BOUNDARIES AND WHAT THAT MEANS. AND NOT ALL QUESTIONS CAN HAVE THE SAME SORT OF GEOGRAPHIC CONTEXT OR GEOGRAPHIC BOUNDARIES, RIGHT? SOME OF MY WORK WILL LOOK AT NEIGHBORHOOD LEVEL, SOME IS COUNTY, SOME IS CENSUS TRACTS, SOME IS COMMUTING ZONES AND OTHER ANALYSIS AROUND THE STATE AND NATIONAL LEVEL, AND I THINK THAT'S IMPORTANT BOTH FROM AN ANALYTICAL STANDPOINT BUT ALSO AS WE THINK ABOUT THE IMPLICATIONS FOR FINDINGS AND WHERE THOSE LEVERS FOR CHANGE ARE. WE KNOW THAT DIFFERENT LEVERS FOR CHANGE AND POLICY ENGAGEMENT ARE GOING TO LOOK DIFFERENT AT A NEIGHBORHOOD OR COMMUNITY LEVEL VERSUS AT A STATE OR FEDERAL LEVEL. WE ALSO TALK ABOUT PROMISING DIRECTIONS FOR INNOVATIVE METHODOLOGICAL APPROACHES IN THE MEASUREMENT OF STRUCTURAL RACISM AND PARTICULARLY THINKING ABOUT THE FACT THAT STRUCTURAL RACISM IS THIS -- YOU KNOW, I OFFER THAT DEFINITION OF SORT OF THE TOTALITY OF WAYS IN WHICH ALL THESE DIFFERENT SYSTEMS ARE INTERACTING TO MANIFEST INEQUITY. SO AS A RESULT, WE'RE TALKING ABOUT SUPER COMPLEX SYSTEMS, AND SO OUR TEAM IS ACTUALLY LEADING SOME REALLY, I THINK, EXCITING WORK TO THINK ABOUT THE MULTIDIMENSIONALITY ABOUT STRUCTURAL RACISM, SO WE CREATED THE MMSR WITH THE GOAL OF -- I WON'T GET INTO ALL THE TECHNICAL DETAILS BUT BASICALLY USING ANALYSIS TO DEVELOP THIS MEASURE THAT WILL HELP TO INFORM HOW SIX DOMAINS OF STRUCTURAL RACISM ARE INTERACTING AND CONTRIBUTING PARTICULARLY TO PRETERM BIRTH AND LOW BIRTH WEIGHT SO WE'RE PILOTING THAT WITH REPRODUCTIVE HEALTH OUTCOMES RIGHT NOW. I ALSO THINK WE NEED TO DO A LOT MORE WORK TO THINK ABOUT HOW TO MAKE THE CURRENT DATA WE HAVE MORE ACCESSIBLE TO BOTH RESEARCHERS AND THE PUBLIC. WE SHOULD ALL BE ABLE TO ASK THE QUESTION HOW IS RACISM OPERATING HERE AND THEN LEVERAGE THE DATA TO BE ABLE TO DIG INTO THAT QUESTION AND RIGHT NOW WE'RE NOT THERE YET. SO THAT'S ALSO WORK THAT WE'RE DOING WITHIN THE CENTER FOR RESEARCH HEALTH EQUITY. >>THANK YOU SO MUCH. THE NEXT QUESTION, WHAT DO YOU SEE AS THE IMPORTANT NEXT STEP TO EXPLORE THE POTENTIAL FOR USE OF THESE NOVEL IMAGING TECHNIQUES IN CLINICAL CARE? AND IF I MAY TAKE THE LIBERTY TO ADD TO THAT QUESTION, BECAUSE I'M WONDERING IF DR. TEKOLA-AYELE COULD ALSO CHIME IN ABOUT ANY POSSIBLE COMBINATION OF TRANS OMIC AND IMAGING EVALUATIONS OF THE PLACENTA IN CLINICAL CARE. SO TO DR. ABUHAMAD FIRST. >>THANK YOU, CAROLINE. SO THE PURPOSE OF OUR RESEARCH WAS FIRST TO TRY TO VALIDATE THE CONCEPT THAT NOVEL ULTRASOUND TOOLS COULD BE USED STARTING IN THE FIRST TRIMESTER, IN EARLY GESTATION AND WE HAVE DONE THAT. WE HAVE SHOWN THAT WE CAN STUDY THE HUMAN PLACENTA QUITE EXTENSIVELY EARLY IN GESTATION AND HAD VALIDATED THE KNOWN CONCEPTS OF PLACENTAL ADAPTATION THAT EXIST IN PREGNANCY MOVING FORWARD. WE HAVE ALSO FOUND SOME ELEMENTS OF PLACENTAL ABNORMALITIES PRESENT IN THE FIRST TRIMESTER THAT CAN PREDICT LONG TERM COMPLICATIONS. BY DESIGN WHICH SHOWS A PRIMARY OUT COME WHICH ENCOMPASSES -- THAT END OF DELIVERING AT LESS THAN 37 WEEKS AS THE INITIAL TRIAL, INITIAL STUDY TO PROVE THE CONCEPT INITIALLY. WHAT THIS HAS TRANSPIRED SINCE WE STARTED THIS RESEARCH IN 2015 IS THAT A LOT OF THESE INNOVATIVE ULTRASOUND TOOLS ARE NOW AVAILABLE ON A LOT OF HIGH END ULTRASOUND SYSTEMS. SO THEY'RE WIDELY AVAILABLE ACROSS. I THINK WHAT IS NEEDED NEXT IS THE VALIDATION OF WHAT WE FOUND IN DIFFERENT LABORATORIES AND DIFFERENT PERSPECTIVES AND MAYBE MULTICENTER TRIAL DESIGN TO SEE FOR THOSE VARIABLES THAT WE FOUND THAT EXIST, THERE IS AN ASSOCIATION, COULD WE VALIDATE THAT BY USING THIS TECHNOLOGY IN OTHER CENTERS. WHAT THE APPLICATION OF THIS WILL BE, IT REALLY OPENS THE DOOR TO IDENTIFYING PREGNANCIES EARLY ON, AND ABOUT RISK STRATIFYING OF PREGNANCIES IN EARLY GESTATION WITH REGARDS TO POSSIBLY SOME INTERVENTIONS, WHETHER IT'S INCREASED SURVEILLANCE OR WITH OTHER FORMS OF INTERVENTION THAT CAN REALLY HELP TO IMPROVE OUTCOME LATER ON IN PREGNANCY. >>THANK YOU. AND DR. TEKOLA-AYELE, ANY THOUGHTS ABOUT A FUTURE WHERE THERE WILL BE SOME SORT OF OMIC EVALUATIONS IN PREGNANCY COMBINED WITH IMAGING, PERHAPS, TOO ENABLE PREDICTION OF ADVERSE OUTCOMES? >>YES. I THINK THAT'S A VERY IMPORTANT POINT AND QUESTION. MOVING FORWARD, THE LAST PART OF MY CONCLUSION WAS MAKING SURE CLINICAL -- CENTER -- SO WHAT WE HAVE DONE SO FAR, MOST GROUPS IN STUDIES IN THE PLACENTA IN TERMS OF GENOMICS AND OTHER OMICS ESTABLISHING SOME OF THE FOUNDATIONAL KNOWLEDGE SHOWING THAT, YES, WHEN THERE IS A COMPLICATION, WE SEE MARKER THERE, OR SOME MARKERS AND -- THAT WE SEE IN THE PLACENTA IN TERMS OF OMICS WILL HAVE FUTURE SIGNIFICANCE. SO I THINK WE NEED A POSSIBLE WAY OF REACHING MEASUREMENTS DURING PREGNANCY, BOTH BY COMBINING EMERGING DATA WITH SOME OF THE OMICS INFORMATION THAT WE COULD HARNESS USING THE MATERNAL CIRCULATING BLOOD DURING PREGNANCY, SO -- TOGETHER WITH IMAGING. I THINK BOTH DATASET ARE BIG DATA THAT REQUIRE NEW APPROACHES TO LOOKING UP AND INTEGRATING DIFFERENT -- MACHINE LEARNING, MULTI-OMICS WITH IMAGING, SO WE COULD HAVE INFORMATION THAT'S USEFUL FOR PREGNANCY ENREACHING SOME OMICS IN THE IN VITRO. I THINK THE CHALLENGE IN TERMS OF GENOMICS IS WE HAVE THE CIRCULATING -- SOME CIRCULATING BIOMARKER IN MATERNAL PLASMA OR SERUM, BUT ALSO WE COULD HARNESS THE MATERNAL CIRCULATING BLOOD -- BUT NOW WE NEED WAYS TO ENRICH THE FETAL -- WE WOULD HAVE LARGE SCALE MEASUREMENT OF MARKERS OF THE FETAL GENOME DURING PREGNANCY. I THINK ONCE THAT'S ACHIEVED -- THANK YOU. >>THANK YOU. WE HAVE JUST A FEW MINUTES LEFT. THE NEXT QUESTION IS FOR DR. METZ. YOU ARE ALSO THANKED FROM THE AUDIENCE, AS ALL OF YOU ARE, FOR YOUR PRESENTATION. TODAY, THE FDA IS DISCUSSING THE POTENTIAL DISCIPLINE ROLE OF -- FOR PRETERM BIRTH. WHAT IS THE NETWORK'S POSITION ON THIS, AND MORE BROADLY, HOW DOES THE NETWORK NAVIGATE THE INTERSECTION OF SCIENCE AND POLICY? >>THAT IS A LOADED QUESTION. I SAW THAT NEWS BULLET TODAY AND WAS WONDERING IF IT WOULD COME UP. I MEAN, I THINK THERE'S BEEN A LOT OF DISCUSSION ABOUT THIS. I THINK, YOU KNOW, THIS IS THE REASON THAT WE LOOK AT SORT OF ALL OF THE EVIDENCE. I MEAN, I DON'T KNOW THAT THE NETWORK HAS A POSITION PER SE. THE NETWORK IS A RESEARCH INFRASTRUCTURE TO CONDUCT CLINICAL TRIALS. THE NETWORK CAN SAY THEY STAND BY A TRIAL THEY PERFORMED. I THINK PEOPLE THINK THAT WAS NOT DONE RIGOROUSLY. I THINK THE QUESTION THAT'S COME UP MORE WITH THE PROGESTERONE DEBATE IS, IS THERE A SUBPOPULATION THAT PROGESTERONE BENEFITS, IS IT TRULY THAT PROGESTERONE SHOULD BE COMPLETELY REMOVED FROM PRACTICE, AND I DON'T KNOW THAT -- I CAN'T SAY THAT THE NETWORK HAS A POSITION ON THAT. I MEAN, I THINK THAT THAT'S NOT WHAT THE FDA IS CONTEMPLATING NOW, TAKING ALL THE AVAILABLE EVIDENCE. BUT I THINK IT SPEAKS TO THE IMPORTANCE OF TESTING THESE INTERVENTIONS AT PRACTICE AND THE CAPACITY TO DO THESE LARGE TRIALS THAT LOOK AT DIFFERENT INTERVENTIONS AND DETERMINE WHETHER THEY ARE EFFICACIOUS FOR PREGNANT PEOPLE AND IMPROVING OUTCOMES. CERTAINLY PROGESTERONE HAS BEEN IN PRACTICE FOR A LONG TIME AND I UNDERSTAND THAT'S LARGELY BECAUSE OF THE MFMU TRIAL THAT CAME OUT A LONG TIME AGO, BUT I THINK OBVIOUSLY NOW IT'S IMPORTANT TO TAKE THE BULK OF THE EVIDENCE TOGETHER AND MOVE FORWARD FROM THERE. BUT I DON'T KNOW THAT THE NETWORK IS IN THE BUSINESS OF SORT OF BECOMING INVOLVED IN POLICY BEYOND OF FACT OF SAYING WE'VE DONE THIS TRIAL, WE THINK THIS TRIAL WAS DONE RIGOROUSLY, AND STAND BEHIND THE WORK THAT WAS DONE BY THE MFMU, BUT CERTAINLY, YOU KNOW, UNDERSTANDING THAT THERE'S A LARGER BODY OF EVIDENCE OUT THERE THAT NEEDS TO BE CONSIDERED. >>THANK YOU. VERY WELL SAID INDEED. THAT BRINGS US, I BELIEVE, TO THE END OF OUR TIME, UNLESS I GET A SIGNAL THAT WE CAN KEEP GOING. PLUSH OR WE CAN HAVE THE NEXT QN FOR DR. TEKOLA-AYELE, WHICH IS THE ABILITY TO ADJUST FOR GENOTYPE BASED -- DOES IT HELP THE GENERALIZE THE RESEARCH TO OTHER STUDIES CONSIDERING THE SAMPLE STUDY PERTAINED TO ONE POPULATION AND THIS WOULD USUALLY BE CONSIDERED A LIMITATION. SPECIFIC SPECIFIC -- IN SPECIFIC GROUPS OR POPULATIONS? >>YES, I THINK THAT'S A CERTAIN POINT. -- ANCESTRY, USUALLY THE ESTIMATE DEPENDS ON WHICH SAMPLES WE USE. BECAUSE VARIOUS -- NOT IN THE U.S. WHERE WE SAMPLE THE DIFFERENT GROUPS. WE GET DIFFERENT POPULATIONS -- IT'S VERY CRITICAL ABOUT THAT, AND THERE ARE -- GENETIC ANCESTRY -- HAS ALSO LIMITATION IN TERMS OF WHAT ANCESTRIES WE USE AS A REFERENCE. SO THE ARE MO POPULATIONS WE CAN SEQUENCE, WE FIND SLOWLY THE ESTIMATE. AND ONE THING I WOULD LIKE TO NOTE IS, SOMETIMES THE GENETIC ANCESTRY ESTIMATES CAN BE CORRELATED WITH OTHER SOCIODEMOGRAPHIC OR CULTURAL OR DIETARY OR OTHER LIFESTYLE FACTOR, AND WE SHOULD BE CAREFUL TO SAY GENETIC ANCESTRY, THE GLOBAL -- ASSOCIATED WITH AN OUTCOME, IT COULD JUST BE BECAUSE OF THE CORRELATION OF GENETIC ANCESTRY OF ENVIRONMENTAL FACTORS, NOT DIRECTLY SHOW GENETIC -- IT'S VERY IMPORTANT TO PAY ATTENTION TO THAT. >>THANK YOU. AND WITH THAT, I THINK WE WILL CLOSE. AGAIN, PLEASE JOIN ME IN THANKING THIS ESTEEMED PANEL FOR EXCELLENT TALKS. THANK YOU FOR YOUR TIME AND SHARING YOUR EXPERTISE WITH US AS WE CELEBRATE OUR 60TH ANNIVERSARY. >>HELLO, NICHD RESEARCHERS. KIM SCHRIER HERE. I'M THE FIRST EVER PEDIATRICIAN IN CONGRESS. I REPRESENT WASHINGTON'S 8TH CONGRESSIONAL DISTRICT, AND I'M SO EXCITED TO TALK WITH YOU BECAUSE I THINK THAT YOU AND I SHARE THE SAME VALUES ABOUT GIVING OUR CHILDREN THE BEST POSSIBLE START IN LIFE, UNDERSTANDING THE IMPORTANCE OF RESEARCH TO HELP FIGURE OUT HOW WE GET THEM THEIR BEST OUTCOMES IN LIFE, AND ALSO DOING THE CUTTING EDGE RESEARCH INTO DISEASES THAT PLAGUE OUR CHILDREN AND THAT WE ARE ALL DESPERATE TO FIND CURES FOR. SO I WANT TO THANK YOU FOR YOUR WORK AND LET YOU KNOW HOW MUCH I SHARE YOUR VALUES. YOU KNOW, IT'S INTERESTING, THERE WAS A LONG TIME WHEN I THOUGHT, IT'S GOING TO BE REALLY IMPORTANT TO HAVE A WOMAN DOCTOR IN CONGRESS AND IT'S GOING TO BE REALLY IMPORTANT TO I HAVE A PEDIATRICIAN IN CONGRESS BUT I DIDN'T REALLY VISCERALLY UNDERSTAND IT UNTIL I WAS SWORN IN, AND WITHIN WEEKS, THERE WERE MEASLES OUTBREAKS ACROSS THE COUNTRY, AND AS A PEDIATRICIAN WHO HAS WORKED WITH FAMILIES FOR 20 YEARS, SEEING VACCINE HESITANCY UP CLOSE AND PERSONAL, AND THEN BROUGHT FAMILIES ALONG, YOU KNOW, WITH ANSWERING QUESTIONS IN A GENTLE VOICE, AND GETTING HIGH VACCINATION RATES THAT I KNEW IT WAS IMPORTANT TO COMBAT ONLINE VACCINE MISINFORMATION. SO THE FIRST BILL I INTRODUCED AND THAT WAS PASSED THROUGH THE HOUSE AND SENATE AND SIGNED INTO LAW WAS THE VACCINES ACT. AND THE IDEA THERE WAS TO LOOK FOR POCKETS WHERE THERE ISN'T ENOUGH IMMUNIZATION OF CHILDREN, FIGURE OUT WHY AND ADDRESS IT, GET IMMUNIZATION RATES UP AND MISINFORMATION DOWN, AND BOY, HAS THAT GOTTEN A WHOLE NEW LIFE IN THE AGE OF COVID. ON THAT SAME TOPIC, I'VE BEEN AN ADVOCATE FOR MAKING SURE KIDS GET THEIR ROUTINE VACCINATION. WE'VE SEEN A DROPOFF DURING THE PANDEMIC, SO I HAVE WORKED TO EXPAND THE VACCINES FOR CHILDREN PROGRAM TO MAKE IT EASIER TO ACCESS VACCINE AND I'VE BEEN A BIG PROPONENT OF THE HPV VACCINE WHICH IS FINALLY A VACCINE THAT CAN PREVENT CANCER. SO I WANT TO THANK YOU FOR YOUR RESEARCH AND WANT YOU TO KNOW HOW I'M CARRYING THAT BATON TO MAKE SURE KIDS GET GOOD CARE. I HAVE ALSO WORKED ON GETTING LEGISLATION TO SUPPORT MORE PEDIATRICS-SPECIFIC RESEARCH. THERE ISN'T ENOUGH. MOST OF THE RESEARCH IS FOCUSED ON ADULTS. SO I HAVE PUT FORTH LEGISLATION, THE PACT ACT OF 2021, THAT WOULD SPECIFICALLY FUND MORE PEDIATRIC RESEARCH. AND THEN I WANTED TO TALK ABOUT ONE MORE THING BEFORE I CONCLUDE, WHICH IS JUST THE ROLE OF NUTRITION AND THE ROLE OF SOCIAL MEDIA AND SCREEN TIME, AND HOW THOSE IMPACT OUR CHILDREN'S HEALTH. THEIR BRAINS, THEIR DEVELOPMENT, THEIR ATTENTION, THEIR FOCUS, THEIR WEIGHT AND THEIR HEALTH. IT'S THIS IMPACT OF EVERYDAY LIFE DECISIONS AND LIFE CHOICES THAT CAN HAVE LONG TERM IMPACT. SO I'M WORKING ON SHORING UP THE WIC PROGRAM AND THE SNAP PROGRAM TO ENCOURAGE MORE FRUITS AND VEGETABLES BECAUSE IT WILL HAVE LONG TIME PAYOFF BUT ALSO THE EFFECT OF SCREEN TIME AND SOCIAL MEDIA ON CHILDREN'S BRAINS. I WANT TO THANK YOU FOR THE WORK YOU DO TO KEEP KIDS HEALTHIER AND I AM EXCITED TO PARTNER WITH YOU ON THAT JOURNEY. THANK YOU AGAIN. >>OUR NEXT SESSION, RAISING HEALTHY CHILDREN, IS MODERATED BY DR. VALERIE MAHOLMES, CHIEF OF THE PEDIATRIC TRAUMA AND CRITICAL ILLNESS BRANCH IN THE NICHD DIVISION OF EXTRAMURAL RESEARCH. >>GOOD MORNING. I'M DR. VALERIE MAHOLMES, AND I'M DELIGHTED TO SERVE AS YOUR MODERATOR FOR THIS SESSION TITLED "RAISING HEALTHY CHILDREN." WE HAVE AN EXCITING PANEL PLANNED FOR TODAY, AND I'M LOOKING FORWARD TO HEARING THE EXCITING PRESENTATIONS. THERE WILL BE AN OPPORTUNITY FOR QUESTIONS AND ANSWERS AT THE END OF THE PANEL, SO HOLD YOUR QUESTIONS. YOU CAN SUBMIT ANY QUESTION TO THE NICHD PRESS AT MAIL.NICHD.GOV. SO WITHOUT FURTHER ADO, IT IS MY PLEASURE TO INTRODUCE OUR FIRST SPEAKER, DR. ROSEM ROSEMARY TRU, WHO WILL BE JOINING US THROW A PRERECORDED PRESENTATION. SHE PREVIOUSLY SERVED ON THE NICHD ADVISORY COUNCIL IN HER CAPACITY AS VICE PRESIDENT AT SESAME WORKSHOP, SHE'S RESPONSIBLE FOR THE DEVELOPMENT OF THE INTERDISCIPLINARY CURRICULUM ON WHICH "SESAME STREET" IS BASED AND OVERSEES CONTENT DEVELOPMENT ACROSS PLATFORMS, INCLUDING TELEVISION, PUBLISHING, TOYS, HOME VIDEO, AND THEME PARK ACTIVITIES. SHE RECEIVED A PH.D. IN DEVELOPMENTAL AND CHILD PSYCHOLOGY FROM THE UNIVERSITY OF KANSAS AND A B.A. IN PSYCHOLOGY AT RUTGERS UNIVERSITY. PLEASE NOW TURN YOUR ATTENTION TO THE VIDEO. >>HELLO. I'M DR. ROSEMARIE TRUGLIO, SESAME WORKSHOP. I'D LIKE TO START TODAY BY CONGRATULATING NICHD ON THEIR 60TH ANNIVERSARY. IT SUCH A SIGNIFICANT MILESTONE. AND THANK YOU FOR INVITING ME TO DELIVER THIS VISION ANY TRAWK TK TODAY. SO WHAT IS SESAME WORKSHOP'S VISION FOR HEALTHY CHILDREN? LIKE EVERYTHING WE DO, IT STARTS WITH AN INTEGRATED APPROACH. WHILE "SESAME STREET" IS BEST KNOWN FOR THE GROUNDBREAKING TELEVISION SHOW THAT HAS BEEN EDUCATING CHILDREN FOR OVER 50 YEARS, OFTEN FOLKS ARE NOT AWARE OF THE DEPTH AND THE BREADTH OF SESAME WORKSHOP, A GLOBAL NON-PROFIT ORGANIZATION WITH A MISSION TO HELP CHILDREN GROW SMARTER, STRONGER, AND KINDER. AND HERE'S HOW WE DEFINE SMARTER, STRONGER AND KINDER. TODAY I WANT TO FOCUS ON STRONGER AND I'D LIKE YOU ALL TO THINK ABOUT WHAT DOES IT TRULY MEAN TO RAISE A HEALTHY CHILD TODAY? AT SESAME, WE KNOW THAT THE PHYSICAL HEALTH AND THE MENTAL HEALTH WELL-BEING ARE EQUALLY IMPORTANT. BUT OUR VISION FOR STRONGER CHILDREN LIES IN HOW THE TWO ARE INTERCONNECTED. AND THE CONNECTIVE TISSUE IS IN CHILDREN'S DEVELOPING SKILLS, THE COGNITIVE SKILLS TO DEVELOP SELF CONTROL, FOCUSED ATTENTION, AND FLEXIBLE THINKING, ALL WHICH SUPPORT SELF-REGULATION, PERSEVERANCE AND SELF-CONFIDENCE. EXECUTIVE FUNCTION SKILLS ARE KEY TO DEVELOPING HABITS FOR PHYSICAL HEALTH LIKE USING SELF-CONTROL TO CHOOSE HEALTHY FOODS, OR USE STRATEGIES TO SUPPORT MENTAL HEALTH WELL-BEING AND BUILD RESILIENCY SKILLS. AS WE ALL KNOW, PHYSICAL HEALTH AND MENTAL HEALTH WELL-BEING DO NOT EXIST IN ISOLATION IN A CHILD. THEY ARE NATURALLY INTEGRATED. FOR INSTANCE, WHEN A CHILD USES MOVEMENT OR EXERCISE TO COPE WITH BIG FEELINGS, IT NOT ONLY HELPS THEM CALM DOWN, BUT IT ALSO HELPS THEM KEEP THEIR PHYSICAL BODY STRONGER. BUT WHAT WE KNOW AT SESAME IS THAT TALKING DIRECTLY TO CHILDREN IS NOT ENOUGH. SO WE REACH CHILDREN AND CAREGIVERS TO WHAT WE LIKE TO CALL THE CHILD'S CIRCLE OF CARE. AND THAT INCLUDES PARENTS AND GRANDPARENTS, NEIGHBORS, EDUCATORS, HEALTHCARE PROFESSIONALS, LIBRARIANS. ANY PERSON OR INSTITUTION THAT HAS A CAREGIVING ROLE TO PLAY. WE HAVE HUNDREDS OF HOURS OF FREE CONTENT, VIDEOS, STORY BOOKS, RESOURCES FOR CAREGIVERS AND PRACTITIONERS, WHERE CHILDREN CAN PRACTICE THESE STRATEGIES AND BUILD THEIR SELF-REGULATION SKILLS. SO LET'S TAKE THIS OPPORTUNITY TO PRACTICE A SELF-REGULATION STRATEGY WITH ABBY. >>OH, HI! IF YOU WANT TO FEEL THIS WAY, I FEEL KIND OF WORRIED AND YOU BE SET AND -- >>AND I HAVE MY OWN GLUE JAR TOO. AS ADULTS, WE NEED EMOTIONAL REGULATION STRATEGIES AS WELL TO HELP US CALM DOWN OUR ADULT-SIZE BIG FEELINGS. WE ALL NEED A TOOLBOX OF STRATEGIES, AS THERE'S NO ONE STWRAT STRATEGY THAT WILL ALWAYK TO HELP US MANAGE AND REGULATE OUR EMOTIONS. WE ALSO NEED ROLE MODELS WHO AREN'T PERFECT BUT WHO PERSEVERE AND KEEP TRYING IN THE FACE OF CHALLENGES. SO WHO BETTER TO TALK ABOUT SELF-REGULATION AND SELF-CONTROL THAN OUR FRIEND, COOKIE MONSTER. >>HELLO. ME COOKIE MONSTER! HERE TODAY TO TALK TO YOU ABOUT HOW IMPORTANT IT IS TO EAT HEALTHY FOODS. YEAH! NOW, ME KNOW WHAT YOU THINKING. THIS GUY G GONNA TALK ABOUT EATG HEALTHY? THIS GUY WHO EAT COOKIES LIKE THEY'RE GOING OUT OF STYLE? WELL, YOU KNOW ME NOT EXACTLY HEALTHY-EATING ROLE MODEL, BUT ME LEARNING. YEAH. AND ME FOUND OUT THAT EVEN THOUGH COOKIES OKAY AS SPECIAL TREAT SOMETIMES, THERE ARE ALL KINDS OF HEALTHY FOODS THAT YOU CAN EAT ANY TIME! LIKE THESE COLORFUL FRUITS AND VEGETABLES. NUM-NUM. THEY LOOK SO DELICIOUS. THESE KINDS OF FOODS MAKE YOU HEALTHY AND STRONG AND BECAUSE THEY SO GOOD FOR YOU, YOU CAN HAVE THEM ANY TIME! AND YOU KNOW WHAT? THIS SEEMS LIKE GOOD TIME TO ME. COME TO PAPA! OH, OH, OH, APPLE, MMM. >>OUR RESEARCH SHOWS IT'S SO APPEALING TO YOUNG CHILDREN AND IT MAKES THE MESSAGES THEY DELIVER MORE POWERFUL AND EDUCATIONALLY EFFECTIVE. AND THAT GOES FOR ADULTS AS WELL. WE NEVER TALK DOWN TO CHILDREN OR ADULTS. WHICH IS WHY ADULTS LOVE WATCHING AND LEARNING ALONG WITH THEIR CHILDREN. AND THAT IS BY DESIGN. SESAME WORKSHOP CANNOT DO THIS ALONE. WE NEED PROFESSIONALS LIKE YOU TO USE OUR CONTENT WITH YOUNG CHILDREN. AND TO THINK ABOUT THE YOUNGEST CHILDREN WHEN MAKING POLICY DECISIONS. OUR RESOURCES ARE FREE AND BILINGUAL IN ENGLISH AND IN SPANISH. PLEASE USE OUR QR CODE, VISIT OUR WEBSITE, READ OUR BOOKS AND SHARE OUR RESOURCES WITH OTHERS. AND WHETHER YOU'RE A HEALTHCARE WORKER, RESEARCHER AND EDUCATOR, A POLICY MAKER, OR A PARENT AND GRANDPARENT YOU SELF, JUST LIKE SESAME WORKSHOP'S VISION FOR HEALTHY CHILDREN IS AN INTEGRATED APPROACH, WE, TOO, MUST TAKE AN INTEGRATED APPROACH TO CARING FOR AND RAISING HEALTHY CHILDREN. THANK YOU TO NICHD AND YOUR 60 YEARS OF INCREDIBLE LEADERSHIP AND PUBLIC SERVICE, AND THANK YOU FOR ALL YOUR TIME TODAY. >>THAT WAS WONDERFUL. WE WERE DELIGHTED TO HAVE THAT PRESENTATION FROM DR. TRUGLIO. NOW OUR NEXT PANELIST IS DR. WENDY CHUNG, WHO IS THE CLINICAL AND MOLECULAR GENETICIST AT THE KENNEDY FAMILY -- AND KENNEDY FAMILY PROFESSOR OF PEDIATRICS AND MEDICINE AND DIRECTOR OF CLINICAL GENETICS AT COLUMBIA UNIVERSITY. SHE LEADS THE PRECISION MEDICINE RESOURCE IN THE URBAN INSTITUTE AND NATIONAL ORGANIZATION OF RARE DISEASES CENTER OF EXCELLENCE AT COLUMBIA UNIVERSITY. DR. CHUNG DIRECTS NIH-FUNDED RESEARCH PROGRAMS IN HUMAN GENETICS, OF PULMONARY HYPERTENSION, BREAST CANCER, OBESITY, DIABETES, AUTISM AND BIRTH DEFECTS. DR. CHUNG RECEIVED HER B.A. IN BIOCHEMISTRY FROM CORNELL UNIVERSITY, HER M.D. FROM CORNELL UNIVERSITY MEDICAL COLLEGE, AND HER PH.D. FROM THE ROCKEFELLER UNIVERSITY IN GENETICS. PLEASE JOIN ME IN WELCOMING DR. CHUNG TO THE VIRTUAL PODIUM. DR. CHUNG? >>THANK YOU, VALERIE. I DON'T KNOW ABOUT FOLLOWING CHAO COOKIE MONSTER THERE, BUT L FOLLOW UP BY TALKING ABOUT CONGENITAL DIAPHRAGMATIC HERNIA. I THINK OF THIS AS I DO FOR MANY CONDITIONS IN CHILDREN, WHICH IS THAT THEY'RE COMPLICATED, BUT BY UNDERSTANDING THE COMPLEXITY AND THE ETIOLOGY OF THE WHY, WHY CERTAIN THINGS EXIST IN OUR BODIES, WE CAN COME UP WITH BETTER TREATMENTS, BETTER STRATEGIES THAT HELP US TO HAVE HEALTHIER CHILDREN. CONGENITAL DIAPHRAGMATIC HERNIA, AS IS TRUE FOR MANY OTHER CONDITIONS, WHETHER IT BE AUTISM, CONGENITAL HEART DISEASE, OR MANY OTHER THINGS, ARE OFTEN NOT ISOLATED BUT CAN BE ASSOCIATED WITH OTHER MANIFESTATIONS OVER THE LIFE COURSE, AND UNDERSTANDING WHO WILL HAVE WHICH MANIFESTATIONS CAN HELP US TO BE ABLE TO PREPARE OUR CHILDREN FOR HEALTH. ONE OF THE QUESTIONS IS WHAT CAUSES THESE, AND I'M GOING TO FOCUS ON GENETICS THIS MORNING BUT TO SAY THAT THESE ARE NOT THE ONLY CAUSES AND WE ARE STILL AT THE BEGINNING OF OUR UNDERSTANDING. WHEN WE THINK ABOUT THE JE AT GC CAUSES THEY CAN COME IN LARGE OR SMALL PACKAGES. IN SOME CHANGES, LARGE CHROMOSOMAL CHANGES OR DIFFERENCES AND IN SOME CASES SOMETHING THAT AFFECTS ONE GENE THAT CAN CAUSE THESE MYRIAD MANIFESTATION. ONE STUDY WE'VE DONE IS SOMETHING CALLED DHREAMS. WE'VE DONE THIS AS A CONSORTIA AT MANY SITES. NUMBERS MATTER, THAT IS TO UNDERSTAND THE COMPLEXITY, IT REQUIRES OFTENTIMES TENS IF NOT HUNDREDS OF THOUSANDS OF INDIVIDUALS WORKING TOGETHER TO UNDERSTAND WHAT MAKES US DIFFERENT. ONE OF THE THINGS WE'VE REALIZED WITH SOME VERY SIGNIFICANT CONDITIONS IN CHILDREN IS THAT THEY'RE GENETIC BUT THEY DON'T NECESSARILY RUN IN FAMILIES, AND ONE OF THE REASONS FOR THAT IS BECAUSE THEY CAN BE DUE TO DE NOVO OR NEW GENETIC VARIANTS IN THE CHILD. FOR THOSE WHO MAY BE PARENTS TO REALIZE THERE'S NOTHING THAT YOU'VE DONE TO CAUSE SUCH DE NOVO GENETIC VARIANTS, AND WE ALL HAVE THEM, ALL OF OUR CHILDREN HAVE THEM. BUT IN SOME CASES DEPENDING ON WHERE THEY FALL THEY CAN BE ASSOCIATED WITH VERY SIGNIFICANT HEALTH RISKS. I WON'T GO INTO THE COMPLEXITY BUT IT IS COMPLEX. THAT IS THAT EACH OF US HAVE 3 BILLION, WITH A B, GENETIC ALPHABET LETTERS AND DEFINE THAT ONE NEEDLE IN THE HAYSTACK CAN BE CHALLENGING. WITHIN THIS, WE HAVE 20,000 GENES, AND WE'RE STARTING TO REALIZE THAT SOME GENES DON'T TOLERATE OR DON'T LIKE TO BE DITTLED. THAT IS WHEN MOTHER NATURE DIDDLES THOSE GENES, THEY CAN RESULT SOMETIMES IN VERY BIG CHANGES IN HOW THE BODY DEVELOPS. AND JUST TO SIMPLISTICALLY SAY THAT WE'RE UNDERSTANDING THAT THOSE PATTERNS BY UNDERSTANDING THE COMPLEXITY AND THOSE PATTERNS THAT WE SEE. IN SOME CASES, ONE GENE CAN BE DISRUPTED BY SIMPLY DELETING IT, AND THAT CAN BE SEEN IN A DIFFERENCE AT THE CHROMOSOME LEVEL. IN OTHER CIRCUMSTANCES, THAT SAME GENE CAN BE CHANGED OR THERE CAN BE VARIATION WITH ONE SINGLE BUILDING BLOCK, ONE SINGLE AMINO ACID. NOW THE CHALLENGE BECOMES THAT ALL OF US HAVE THESE TYPES OF GENETIC VARIATIONS, AND DIFFERENTIATING WHICH ONES ARE BENIGN OR NORMAL AND WHICH ONES ARE DISEASE-CAUSING OR CONDITION CAUSING CAN BE CHALLENGING. BUT AGAIN, STUDYING MANY INDIVIDUALS CAN START TO UNDERSTAND THIS. WE ALSO UNDERSTAND THAT THERE CAN BE CONDUCTORS AND ORCHESTRAS, THAT IS, GENES THAT ARE RESPONSIBLE FOR OUR PATTERNS OF DEVELOPMENT VERY EARLY IN EMBRYONIC AND FETAL DEVELOPMENT, AND SUCH CHANGES CAN HAVE A LIFELONG OF IMPACT ON PARTS OF THE BODY THAT ARE AFFECTED. IN SOME CASES, THEY DO REALIZE THAT THEY CAN RUN IN FAMILIES, SO BESIDES THESE BEING DE NOVO OR NEW GENETIC VARIANTS, SOMETIMES THEY CAN BE PASSED DOWN FROM GENERATION TO GENERATION. BUT IN THOSE GENERATIONS, THERE MAY BE DIFFERENCES IN TERMS OF HOW THEY MANIFEST AND HOW THEY'RE SEEN, AND THAT MAY BE BECAUSE IT'S NOT JUST THE GENE, BUT OTHER ENVIRONMENTAL NUTRITIONAL, OTHER FACTORS AS WELL. AS WE'RE LOOKING AT THIS, SOMETIMES WE CAN SEE THAT THE DIFFERENCES THAT ARE MANIFEST IN THE BODY CAN BE QUITE SUBTLE. I'M SHOWING HERE CONGENITAL DIAPHRAGMATIC HERNIA THAT'S SEEN IN A FATHER AND GRANDFATHER THAT CAN BE VERY TEENY TINY. VERY SMALL, AS OPPOSED TO A VERY LARGE DIAPHRAGMATIC DEFECT THAT WE CAN SEE IN A CHILD THAT HAS MUCH GREATER IMPLICATION. AS WE'RE SEEING THIS, WE STARTED TO REALIZE THAT CHILDREN WHO HAVE CONGENITAL DIAPHRAGMATIC HERNIAS AND HAVE THESE GENETIC VARIANTS IN FACT UNFORTUNATELY DO WORSE. THEY HAVE HIGHER RATES OF MORTALITY, THEY HAVE HIGHER RATES OF SEVERE COMPLICATION CALLED PULMONARY HYPERTENSION AND THEY HAVE MORE SEVERE PROBLEMS IN TERMS OF DEVELOPMENT, GROWTH AND BRAIN DEVELOPMENT OVER TIME. AS WE'VE DONE THIS, WE'VE REALIZED THAT ANY ONE GENE IS RELATIVELY UNCOMMON, BUT COLLECTIVELY THEY OFTEN ACCOUNT FOR ABOUT 20% OF THE CASES THAT WE SEE, AND THAT AS WE SEE THESE, WE CAN REALIZE THAT EVEN IN THIS CASE IDENTICAL TWINS THAT HAVE THE SAME EXACT GENE AND THE SAME EXACT GENETIC VARIANT MAY HAVE DIFFERENT MANIFESTATIONS. AGAIN, SHOWING US THAT IT'S NOT ALL IN THE GENES. THERE ARE OTHER FACTORS AS WELL. FACTORS WE DON'T ALWAYS UNDERSTAND. I'LL SIMPLY SAY THAT IN GOING FORWARD, WE CAN ALSO BE ABLE TO VET NOT ONLY IN HUMANS BUT BE ABLE TO USE ANIMAL MODELS TO UNDERSTAND THE VERY COMPLEX BIOLOGY. WE'VE BEEN ABLE TO DO THIS BY STUDYING, FOR INSTANCE, MOUSE MODELS AND EVEN FROG MODELS, FLY MODELS TO BE ABLE TO MODEL THIS, AND UNDERSTAND WHAT THINGS ARE PRIMARY AND AFFECTED BY THE GENES AND WHAT THINGS MAY BE SECONDARY TO THE WAY THE BODY IS DEVELOPING. IN DOING THIS, SOME OF THIS CAN BE QUITE ELEGANT AND HAS REALLY CHANGED OUR IDEAS OF UNDERSTANDING WHAT IS FIRST AND WHAT IS SECOND. FOR CONGENITAL DIAPHRAGMATIC HERNIA OR HAVING A HOLE IN THE DIAPHRAGM THAT SEPARATES THE CHEST FROM THE ABDOMEN, WE THOUGHT MANY OF THE PROBLEMS WITH BREATHING OR SECONDARY TO COMPRESSION OF THE LUMPS AS THEY WERE DEVELOPING. COMPRESSION OF THE LUNGS BECAUSE THE INTESTINES WERE PUSHED UP INTO THE CHEST AND COMPRESSING THE DEVELOPING LUNG. WE NOW, HOWEVER, KNOW THAT MANY OF THE GENES CAUSING CONGENITAL DIAPHRAGMATIC HERNIA ARE ALSO SIMULTANEOUSLY CAUSING PROBLEMS IN DEVELOPMENT AS A PRIMARY EFFECT, AND THOSE PRIMARY EFFECTS ON LUNG DEVELOPMENT, IN FACT, CANNOT BE FIXED BY SIMPLY SURGICALLY FIXING THE DIAPHRAGM. AND THIS NOW HAS IMPLICATIONS FOR SOMETHING CALLED FETOESOPHAGEAL OCCLUSION TREATMENT, WHERE FETAL SURGERY WE'RE SOMETIMES CHOOSING TO DO IN THE RIGHT CANDIDATES TO HELP LUNG DEVELOPMENT. SO THIS INFORMATION IS HELPING US TO PREPARE OUR CHILDREN EVEN PRENATALLY, BEFORE THEY'RE BORN. WE SEE THE SAME PATTERN NOT JUST WITH THIS ONE CONGENITAL ANOMALY BUT ALSO WITH ANOTHER ONE, ESOPHAGEAL ATRESIA, SIMILAR LEVELS OF COMPLEXITY, AND SIMILARLY, BEING ABLE TO REALIZE THAT THEY AFFECT NOT JUST THE DEVELOPMENT OF THE AERO DIE JEFFTIVE SYSTEM BUT ALSO OTHER THINGS LIKE THE HEART, THE BRAIN AND OTHER PARTS OF THE BODY. AGAIN, ANIMAL MODELS CAN BE HELPFUL, BEING SURE OF THESE RESULTS WHEN WE DON'T SEE VERY MANY PEOPLE WITH THESE SAME CONDITIONS, AND IN FACT WE'VE BEEN ABLE TO DO THIS IN VERY HIGH THROUGHPUT BY USING ANIMALS LIKE FROGS TO BE ABLE TO RECAPITULATE THE SAME BIOLOGY THAT WE SEE IN HUMANS AND OTHER MODEL ORGANISMS. AS WE'RE DOING THIS, WE REALIZE THAT THERE IS EXTREME COMPLEXITY. THAT IS THERE CAN BE CHANGES OR ALTERATIONS IN MANY, MANY, MANY DIFFERENT GENES THAT CAN AFFECT NOT JUST THE ARR AERODIGESTIVE SYSTEM BUT IN FACT OTHER AREAS OF THE BODY AS WELL. AS WE DO THIS, WE'RE ABLE TO SEE THAT SOME OF THESE DIFFERENCES ALSO HAVE EFFECTS NOT JUST IN THE PART OF THE BODY, BUT IMPORTANTLY, THE PART OF THE BRAIN THAT WE OFTENTIMES VERY MUCH CARE ABOUT IN TERMS OF THE ULTIMATE OUTCOME. AND IN FACT, ALL OF THESE ARE CONNECTED IN THE SHORT AND THE LONG TERM. I'M JUST GOING TO SKIP THROUGH. WE'VE REALIZED THAT MANY OF THESE STUDIES REQUIRE VERY LARGE NUMBER, AND ONE STUDY THAT WE'VE DONE, FOR INSTANCE, OF AUTISM NOW HAS OVER 100,000 INDIVIDUALS WITH AUTISM PARTICIPATING, AS WELL AS OVER 200 THOW 200,000 OR FAMILY MEMBERS. WE APPRECIATE THAT TO UNDERSTAND THE COMPLEXITY OF THE SPECTRUM OF AWFUL, WE AUTISM, WE HAVE TO HAVE EVERYONE REPRESENTED, AND WE DON'T WANT TO LEAVE ANYONE BEHIND. AS WE'RE DOING THIS, WE REALIZE WE'RE JUST BEGINNING TO UNDERSTAND THIS COMPLEXITY. FOR THESE DE NOVO GENETIC VARIANTS, WE REALIZE WE UNDERSTAND ABOUT TWO THIRDS OF THOSE GENES INVOLVED, BUT WHEN IT COMES TO ALSO INHERITED VARIANTS THAT ARE PASSED DOWN WITHIN THE FAMILIES, WE ACTUALLY ONLY UNDERSTAND A SMALL FRACTION, ABOUT 15% OF THOSE GENETIC VARIANTS. AND IN THOSE CASE, WE USE THESE TO UNDERSTAND BIOLOGY. WE USE THESE TO UNDERSTAND THE COMPLEXITY OF THE WAY OUR BRAINS WORK, ABOUT WHAT UND UNDERLIES BEHAVIOR SO WE CAN HELP EACH INDIVIDUAL BE THE BEST VERSION OF THEMSELVES, BY UNDERSTANDING THIS COMPLEX NEUROBIOLOGY, WE SHOULD BE ABLE TO UNDERSTAND BETTER WAYS OF SUPPORTING INDIVIDUALS, HELP TO EDUCATE THEM BETTER, AND TO HELP WITH SOME OF THOSE THINGS THAT WE'VE LEARNED FROM "SESAME STREET." THAT EMOTIONAL REGULATION AND EXECUTIVE FUNCTION. AS WE DO THIS, WE THOUGHT IT WAS QUITE IMPORTANT TO ENGAGE OUR PARTICIPANTS IN OUR RESEARCH STUDY AND AS WE'VE DONE THAT, WE'VE RETURNED THAT INFORMATION BACK TO PARTICIPANTS. RETURNING, FOR INSTANCE, RESULTS OF GENETIC INFORMATION SO THAT WE COULD LEARN TOGETHER ON THIS JOURNEY. AS WE'VE DONE THIS, WE'VE SET UP INDIVIDUAL COMMUNITIES AROUND EACH OF THESE GENETIC CONDITIONS SO THAT WE CAN LEARN TOGETHER. THESE HAVE NOW SPAWNED INDIVIDUAL GENETIC CONDITIONS IN A PROGRAM CALLED SIMON SEARCHLIGHT IN NOW OVER 170 INDIVIDUAL CONDITIONS WHERE WE ARE LEARNING TOGETHER. EACH OF THESE CONDITIONS HAS ITS OWN PROFILE, ITS OWN UNIQUE CHARACTERISTICS, AND WITHIN THIS, WE FORMED INTERNATIONAL COMMUNITIES WITH FAMILIES HELPING FAMILIES, AND SUPPORTED BY INDIVIDUALS LIKE DOCTORS, PSYCHOLOGISTS, THERAPISTS, EDUCATORS, INDIVIDUALS IN PUBLIC POLICY SO THAT WE'RE WORKING TOGETHER TO ENRICH THE LIVES OF THOSE CHILDREN. IT'S NOT EASY, BUT WE'RE MAKING PROGRESS. AS WE'RE DOING THIS, WE REALIZE THAT WE OFTENTIMES NEED TO LEARN THIS INFORMATION EARLIER. THAT IS THAT ALONG THIS DIAGNOSTIC JOURNEY, IT MAY TAKE PARENTS OTHERWISE SOMETIMES YEARS OR EVEN DECADES TO COME TO AN ANSWER, AND BY DOING THIS MORE EFFICIENTLY AND FASTER, HELPS WITH THE FRUSTRATION THAT CAN COME FROM WANDERING IN THE WILDERNESS, NOT HAVING A CLEAR GUIDEBOOK OF HOW TO BE ABLE TO NAVIGATE THIS COMPLEX SPACE. FAMILIES HAVE APPRECIATED THAT AAN EARLIER DIAGNOSE HELPS THEM TO GET TO SOME OF THE ANSWERS AND FIND PROVIDERS AND OTHER FAMILIES THAT CAN HELP THEM IN THIS JOURNEY. THERE ARE NOW IN PLACE WAYS OF BEING ABLE TO HELP FROM A GENETIC POINT OF VIEW AND DO THIS ON SCALE, TO BE ABLE TO COME TO THE INFORMATION, IN SOME CASES PRENATALLY, TO HELP AFTER DELIVERY, AND IN SOME CASES, NEONATALLY TO BE ABLE TO GET THIS INFORMATION IN DAYS RATHER THAN POTENTIALLY YEARS OR EVEN DECADES. AS WE'VE DONE THIS, WE'VE STARTED AN IMPORTANT NEW INITIATIVE FOR EQUITY. IT'S A PROGRAM WE CALL GUARDIAN, THE GENOMIC UNIFORM SCREENING AGAINST RARE DISEASES IN ALL NEWBORNS, LET ME UNDERSCORE "ALL." WITH THIS, THIS IS TAKING THE SAME PRINCIPLES THAT WE'VE PREVIOUSLY USED AS PEDIATRICIANS FOR NEWBORN SCREENING, BUT EXPANDED THIS BEYOND THE USUAL 40 OR 50 CONDITIONS THAT MOST STATES PERFORM. WE'VE DONE THIS BY USING A NEW METHOD OF EARLY DIAGNOSIS, THAT OF DNA SEQUENCING. BY DOING SO, WE USE THE SAME NEWBORN SCREENING BLOOD SPOT THAT WE USE FOR CONDITIONS LIKE FENYLKETONURIA, CONDITIONS TREATABLE SO THEY CAN START THEIR TREATMENT AS EARLY AS POSSIBLE. GIVEN THE COMPLEXITY OF THIS, WE'VE STARTED EDUCATING FAMILIES ABOUT THESE OPTIONS PRENATALLY IN THE THIRD TRIMESTER, AND AS WE'RE ROLLING THIS OUT, WE HOPE TO BE ABLE TO EVENTUALLY ACCOMMODATE 100,000 BABIES WHO ARE BORN IN NEW YORK CITY AS PART OF THIS PROJECT CALLED GUARDIAN. AS WE'RE DOING THIS, IT IS NOT SIMPLY ABOUT A DIAGNOSIS. IT IS NOW USING THAT INFORMATION TO BE ABLE TO MEET STANDARDS OF CARE AND ALLOW INDIVIDUALS TO HAVE ACCESS TO THE SAME INFORMATION AND TO THE SAME SURFACES. SO THE DIAGNOSIS IS BUT THE BEGINNING OF THIS STRATEGY. AS WE'RE DOING THIS, WE REALIZE THAT WE'RE STILL LEARNING. WE DON'T UNDERSTAND HUMAN GENETIC VARIATION, ESPECIALLY NOT FOR INDIVIDUALS WHO ARE NOT OF EUROPEAN ANCESTRY. SO AS WE'RE DOING THIS, WE'RE CONTINUING TO LEARN AND CONTINUING TO APPLY THIS NEW INFORMATION TO ALL BABIES GOING FORWARD. WE'RE ALSO USING THE SUPER HIGHWAYS OF INFORMATION WE HAVE IN MEDICINE, THE ELECTRONIC HEALTH RECORD. WE'RE USING THIS TO POPULATE THESE SO THAT PEDIATRICIANS, NO MATTER WHERE THEY'RE LOCATED, CAN ACCESS THE STANDARDS OF CARE THAT WE NEED TO TAKE CARE OF CHILDREN WITH RARE CONDITIONS. EVEN THOUGH THESE RARE CONDITIONS ARE INDIVIDUALLY RARE AND MIGHT BE ONE IN 10,000 OR ONE IN 100,000 CHILDREN, COLLECTIVELY THEY ARE EXTREMELY COMMON AND SEEN IN APPROXIMATELY 10% OF THE POPULATION. SO DOING THIS SOLVES THESE PROBLEMS NOT JUST FOR ONE CHILD AT A TIME, BUT REALLY PROVIDES SYSTEMS OF CARE THAT WE CAN USE AND DISSEMINATE QUITE BROADLY TO MAKE SURE ALL CHILDREN ARE ABLE TO BENEFIT AND LIVE THE HEALTHIEST VERSIONS OF THEMSELVES. AS WE'RE DOING THIS, WE ALSO BELIEVE THAT FAMILIES THEMSELVES ARE INCREDIBLY IMPORTANT PARTNERS ON THIS JOURNEY, SO SUPPLYING THIS INFORMATION TO THEM AS WELL IN USER-FRIENDLY WAYS, IN INFORMATION USING PLAIN LANGUAGE, ALLOWS THEM TO ACCESS THIS IN MANY DIFFERENT LANGUAGES AND WAYS THAT THEY CAN DIGEST AND BE ABLE TO USE COLLABORATIVELY WITH THEIR PROVIDERS AND WITH THEIR THERAPISTS AND TEACHERS TO AGAIN SUPPORT THEIR CHILDREN TO BE THEIR BEST SELVES. AS WE'RE DOING THIS, WE REALIZE THAT THERE ARE MANY THINGS TO LEARN BUT WE'RE LEARNING TOGETHER. WE'RE LEARNING ACROSS THE DIVERSITY OF OUR COMMUNITIES AND AS WE'RE DOING THIS, WE'RE PROTECTING PRIVACY, BUT BEING ABLE TO SHARE DATA IN WAYS THAT ARE RESPONSIBLE SO WE CAN ALL LEARN FASTER THROUGH THE BENEFIT OF THE NEXT GENERATION OF OUR CHILDREN. I'D LIKE TO THANK THE MANY PEOPLE THAT MAKE THIS POSSIBLE AND THAT WORKED HARD EVERY SINGLE DAY FOR THE CARE OF OUR CHILDREN. THANK YOU. >>THANK YOU, DR. CHUNG. NOW REMEMBER, IF YOU HAVE QUESTIONS FOR DR. CHUNG, PLEASE SUBMIT THEM TO NICHDPRESS@MAIL.NIH.GOV. AND NOW OUR NEXT SPEAKER, DR. AUDREY ODOM JOHN, WILL JOIN US AT THE VIRTUAL PODIUM. SHE IS THE STANLEY PLOTKIN ENDOWED CHAIR, CHIEF OF THE DIVISION OF PEDIATRIC DISEASES AT THE CHILDREN'S HOSPITAL OF PHILADELPHIA. DR. JOHN IS AN INVESTIGATOR IN THE PATHOGENESIS OF INFECTIOUS DISEASES OF THE WELCOME FUND AND HAS BEEN RECOGNIZED WITH SEVERAL HONORS INCLUDING THE EMERGING LEADER AWARD AT DUKE UNIVERSITY SCHOOL OF MEDICINE, A YOUNG INVESTIGATOR AWARD OF THE AMERICAN CHEAMERICAN CHEMICAL S, INFECTIOUS DISEASE, AND WAS THE INAUGURAL IDEA INCUBATOR GRAND PRIZE WINNER OF THE INFECTIOUS DISEASES SOCIETY OF AMERICA. PLEASE JOIN ME IN WELCOMING DR. AUDREY ODOM JOHN. >>HELLO, EVERYONE, AND THANK YOU, VALERIE, FOR THE KIND INTRODUCTION. IT'S A PLEASURE TO GET A CHANCE TO INTRODUCE SOME OF OUR MORE RECENT WORK ON IMPROVING THE DIAGNOSIS OF PEDIATRIC INFECTIONS. THERE WE GO. SO I'D LIKE TO START WITH A CLINICAL CASE, WHICH IS SOMETHING WE SAW VERY EARLY ON IN THE PANDEMIC. THIS WAS A 5-YEAR-OLD CHILD, PREVIOUSLY HEALTHY, WHO PRESENTED TO OUR HOSPITAL EMERGENCY ROOM WITH FEVER AND SHOCK. SHE WAS ADMITTED TO THE INTENSIVE CARE UNIT, AND SHE HAD HAD PRECEDING FOUR DAYS OF HIGH FEVER FOLLOWED BY RASH AND RED EYES, VOMITING AND DIARRHEA. AND SHE AT THE TIME -- THIS WAS DURING OUR VERY FIRST WAVE OF COVID-19 IN OUR COMMUNITY, HIGH LEVELS OF TRANSMISSION WITH SARS-COV-2. THIS QHIELD GO ON TO BE DIAGNOSED WITH A CONDITION CALLED MISC, MULTISYSTEM INFLAMMATORY DIN DROME IN CHILDREN, WHICH IS ASSOCIATED WITH PRECEDING SARS-COV-2 INFECTION ABOUT FOUR TO SIX WEEKS PRIOR TO THIS ONSET OF THIS CONDITION. IT'S A CONDITION THAT'S CHARACTERIZED BY SYSTEMIC INFLAMMATION IN A WIDE CONSTELLATION OF SYMPTOMS INCLUDING RASH AND G.I. SYMPTOMS, BUT FEW CHILDREN HAVE ALL THE SYMPTOMS AND THEY CAN BE TRULY LIFE-THREATENING. MOST CHILDREN END UP IN THE ICU BUT RESPOND VERY WELL TO TREATMENT. AND THE KEY FOR THIS PRESENTATION IS IT'S VERY HARD TO DIAGNOSE, AND THIS WAS A PROBLEM EARLY ON IN THE PANDEMIC AND CONTINUES TO BE SO TO THIS DAY. THE CLINICAL CHALLENGE REALLY THAT WE SOUGHT TO ADDRESS WAS WHICH CHILD OR TEEN WHO PRESENTS WITH FEVER AND VOMITING HAS MIS-C? AS YOU IMAGINE, THIS WAS A DISEASE THAT REALLY HAD A VERY HIGH LEVEL OF CONCERN BY FRONT LINE EMERGENCY ROOM PHYSICIANS EARLY ON IN THE PANDEMIC, WHERE WE WERE ALL LEARNING ABOUT THIS DISEASE IN THE FIRST PLACE. THERE WERE A NUMBER OF CASES THAT HAD BEEN SEEN IN THE EMERGENCY ROOM, SENT HOME BECAUSE THEY WERE THOUGHT TO HAVE VIRAL GASTROENTERITIS, BUT RETURNED IN SHOCK. AND THEN, OF COURSE, WHEN YOU'RE IN THE MIDDLE OF A WAVE AND YOU'RE SEEING CASE AFTER CASE OF MIS-C, THERE WAS ANCHORING BIAS. SO A NUMBER OF CHILDREN WERE ADMITTED, THOUGHT TO HAVE MISS BEING AND HAD DELAYED TREATMENTS BECAUSE THEY ACTUALLY HAD NON-MISS BEING CONDITI NON-MIS-C. OUR SOLUTIONS REALLY RELIED ON THIS FUNDAMENTAL SORT OF BIOLOGICAL PRINCIPLE, WHICH IS THAT PEOPLE STINK. WHAT DO WE MEAN BY THAT? WE MEAN PEOPLE GAVE OFF A WIDE VARIETY OF VOLATILE ORGANIC COMPOUNDS WITH OUR RECEPTORS RECOGNIZE AS AS WELL SMELLS BUTN ALSO PICK UP BY SPECTROMETRY. WE'VE BEEN PARTICULARLY INTERESTED IN BREAD BREATH VOLAS BECAUSE BREATH IS A VERY RICH SUBSTANCE IN HYDROCARBONS THAT HAVE THE SPECIFICITY WHICH MEANS THEY CAN BE DETECTED BY OLDER TECHNOLOGIES LIKE BREATHALYZERS JUST LIKE THE BOMB SNIFFERS USED IN THE AIRPORT, FOR INSTANCE. SO THEY'VE BEEN REALLY, INTERESTED IN BREATH AS A SOURCE OF INFORMATION ABOUT WHAT'S GOING ON IN THE REST OF THE BODY. AND OF COURSE THAT'S BECAUSE BREATH ITSELF IS REALLY A WINDOW TO THE BLOOD. WE KNOW THE ALVEOLI IN THE LUNGS ARE REALLY EXACTLY WHERE GAS CHANGE OCCURS IN THE BODY AND SO THE COMPOUNDS THAT ARE PRESENT IN THE GUT ARE REALLY REFLECTIVE OF WHAT'S GOING ON IN THE BODY AT LARGE. AND OUR WORK HAS REALLY RELIED ON A VERY STRAIGHTFORWARD PIPELINE OF BIOMARKER DISCOVERY, WHICH IS OF COURSE WE COMPARE PATIENTS WITH AND WITHOUT A PARTICULAR CONDITION. WE USE A VARIETY OF SAMPLES PARTICULARLY INTERESTED IN BREATH BUT OTHER NONINVASIVE SAMPLES LIKE URINE AND SALIVA ARE ALSO IMPORTANT. WE USE HIGH DIMENSIONAL MASS SPECTROMETRY TO UNDERSTAND THE DIFFERENCES BETWEEN PATIENTS WITH AND WITHOUT THE DISEASE TO IDENTIFY BIOMARKERS THAT THEN MIGHT BE ABLE TO USE FOR NONINVASIVE DIAGNOSTICS. AND OUR WORK IN SARS-COV-2 AND MIS-C ARE REALLY BUILT ON LONG-STANDING WORK IN OUR GROUP ON A DIFFERENT DISEASE, WHICH IS MALARIA. PARTICULARLY IMPORTANT FOR GLOBAL CHILD HEALTH. MALARIA KILLS ON AVERAGE ABOUT AS MANY PEOPLE EVERY YEAR AS COVID-19 DID IN 2020. AND MOST OF THE DEATHS DUE TO MALARIA ARE IN CHILDREN UNDER THE AGE OF 5 OR IN PREGNANT WOMEN. AND WE HAD PREVIOUSLY BEEN INTERESTED IN UNDERSTANDING WHETHER WE COULD USE BREATH AS A DIAGNOSTIC TOOL FOR MALARIA BY COMPARING FEBRILE CHILDREN WITH AND WITHOUT MALARIA AND TO INTERVIEW AN INDEPENDENT COHORT TO NOT ONLY VALIDATE THAT THESE BREATH BIOMARKERS ARE PLENTY IN CHILDREN, SPECIFICALLY, MALARIA, BUT THAT THEY, IN FACT, RESPOND TO TREATMENT BY ANALYZING CHILDREN AFTER THEY'VE UNDERGONE MALARIAL TREATMENT. OBVIOUSLY WHEN THE PANDEMIC HIT, MY LAB WAS ABLE TO UNDERSTAND WHETHER WE COULD USE NONINVASIVE CLINICAL SAMPLES FOR CLINICAL DIAGNOSIS OF SARS-COV-2. WE STOOD UP THIS STUDY WHICH WE CALL THE BUS STUDY FOR BREATH, URINE AND SALIV V SALIVA. THAT STUDY ALSO TOOK ADVANTAGE OF THE VETERINARY SCHOOL AT THE UNIVERSITY OF PENNSYLVANIA AND WE COLLABORATED WITH THE DIRECTOR OF THE PENNVET WORKING DOG GROUP WHO ACTUALLY TEACH DOGS TO SNIFF OUT DISEASE FROM DIFFERENT NONINVASIVE SAMPLES, AND THEY'VE HAD SOME INCREDIBLE SUCCESSES INCLUDING THINGS LIKE OVARIAN CANCER. AND TO CUT RIGHT TO THE CHASE, THE DOGS DO GREAT. SO THIS IS AN EXAMPLE OF THE DATA FROM THE DOGS, BUT THIS IS I THINK EIGHT DIFFERENT DOGS THAT WERE TRAINED OP URINE SAMPLES FOR CHILDREN WITH OR WITHOUT SARS-COV-2. THE AVERAGE SENSITIVITY IS OVER 85%, AND THE AVERAGE SPECIFICITY IS ABOUT 92%. AND THERE'S SOME DOG TO DOG VARIABILITY, BUT YOU CAN SEE THERE DIXIE NEVER MISSED A BEAT. SHE LITERALLY HAD 100% OF SENSITIVITY AND SPECIFICITY IN HER ABILITY TO DETECT SARS-COV-2 IN CHILDREN AND TEENS. SO EVEN BEFORE WE DID THE MASS SPEC WE KNEW THERE WOULD BE A DIFFERENCE IN CHILDREN WITH SARS-COV-2 DUE TO INFECTION. AND IN FACT THAT'S WHAT WE SAW WAS THE CASE. YOU CAN SEE HERE THE VOLCANO PLOT SHOWING THERE ARE SOME SPECIFIC BIOMARKER, IN THIS CASE, SIX DIFFERENT BIOMARKERS THAT CHARACTERIZED THE BREATH OF CHILDREN WITH SARS-COV-2, AND BY CLUSTERING ANALYSIS, YOU COULD REALLY SEE THAT THESE BIOMARKERS WERE DIAGNOSTICS FOR SARS-COV-2. WE ENROLLED A GROUP OF CHILDREN TO EVALUATE THESE BIOMARKERS. THE NUMBERS HAVEN'T SHOWED UP VERY WELL BUT OUR OVERALL ACCURACY WAS ON THIS 90% WITH SENSITIVITY OF ABOUT 9 #%. 9 -- ABOUT 91% SO WE DID REALLY EXCELLENT WITH THE BREATH BIOMARKERS IN TERMS OF OUR ABILITY TO DIAGNOSE SARS-COV-2 INFECTION IN CHILDREN. SO BACK TO OUR ORIGINAL PROBLEM. WE HAD BIOMARKERS OF SARS-COV-2 BUT WE WERE REALLY PARTICULARLY INTERESTED IN DIAGNOSIS OF MIS-C. WE WERE FORTUNATE TO OBTAIN FUNDING THROUGH THE PREVAIL KIDS PROGRAM TO SET UP A PIPELINE OF PROSPECTIVE STUDY TO COLLECT SAMPLES FROM CHILDREN WHO WERE UNDERGOING EVALUATION FOR MIS-C IN OUR EMERGENCY ROOM, AND WE REALLY TRIED TO INTEGRATE ALL THE INFORMATION WE COULD GET FROM THESE CHILDREN, INCLUDING DATA FROM THE ELECTRONIC MEDICAL RECORD, BUT OUR PERSPECTIVE METABOLOMICS, BREATH, EURNG AND SALIVA, AND COMPREHENSIVE YOU MU KNOW PROFILE AS THEY PRESENT QUITE AN INFLAMMATORY SYNDROME AND WE THOUGHT SOME OF THEIR INFLAMMATORY BIOMARKERS MIGHT BE AS DIAGNOSTIC OR BETTER THAN OUR METABOLOMICS BIOMARKERS AND WE USED MACHINE LEARNING TO REALLY NARROW DOWN AND IDENTIFY THE MOST DIAGNOSTIC OF THESE FEATURES IN THESE CHILDREN. WHAT WE FOUND IS THAT CHILDREN WITH MIS-C HAVE MARKED CHANGES IN BREATH METABOLITES. THOSE THAT WERE BEING EVALUATED IN THE EMERGENCY ROOM, THIS IS JUST A HEAT MAP OF DIFFERENT BREATH FEATURES, AND YOU CAN SEE WHICH CHILDREN HAVE MIS-C AND WHICH CHILDREN HAVE NON-MIS-C BUT FEVER. THE CHILDREN WITH MIS-C REALLY STAND OUT DRAMATICALLY FROM CHILDREN WHO HAVE OTHER INFLAMMATORY OR INFECTIOUS CONDITIONS BUT DON'T HAVE MIS-C. YOU MIGHT THINK THAT MAYBE ALL WE'RE SEEING IS THAT RESIDUAL COVID-19 BUT THAT TURNS OUT TO NOT BE THE CASE, SO COMPARE CHILDREN WITH MIS-C TO CHILDREN WHO HAVE ACUTE COVID-19, THEY'RE VERY, VERY DIFFERENT. SO MIS-C IS REALLY A VERY CHARACTERISTIC AND VERY DIFFERENT SYNDROME IN TERMS OF THE BREATH PROFI PROFILE THAT W. IT TURNS OUT THE BREATH BIOMARKERS, ALTHOUGH THEY WERE AMAZING, WERE, IN FACT, NOT OUR MOST DIAGNOSTIC BIOMARKERS. SO AGAIN USING MACHINE LEARNING TO INTEGRATE OUR DATA WE WERE ABLE TO IDENTIFY IMMUNE CELL POM POPP LAITIONS THAT WERE EVEN MORE DIAGNOSTIC FOR MIS-C THAN BREATH MYOMARKERS YIELDING THE SPECIFICITY FOR OVER 90% FOR EACH AND THE AREA UNDER THE OPERATING CURVE OF ABOUT .99. WE HAVE PUT IN OUR TRANSITION PACKAGE AND HOPE TO CONTINUE TO VALIDATE THESE IN ANOTHER PROSPECTIVE COHORT IN MULTICENTERS. SO OUR GOAL IS REALLY RAPID, EASY, SIMPLE DIAGNOSTICS FOR PEDIATRIC INFECTION AND WE'RE PARTICULARLY INTERESTED IN BREATH VOLATILE TOOLS AS A RELIABLE AND NONINVASIVE WINDOW TO HELP A DISEASE WHEN VALIDATED BIOMARKERS ARE ALREADY IN HAND FOR MALARIA AND SARS-COV-2 BUT THERE ARE A LOT OF REMAINING QUESTIONS AND WE'RE EAGER TO REALLY EXPAND ON THIS WORK BOTH TO IMPROVE DIAGNOSTICS FOR OTHER CONDITIONS WHICH ARE PARTICULARLY CHALLENGING, SO MANY OF YOU WILL BE FAMILIAR WITH THE CHALLENGE OF DIAGNOSING WHICH CHILD UNDER THE AGE OF 30 DAYS OF AGE WITH A FEVER ACTUALLY HAS A SERIOUS BACTERIAL INFECTION, AND WE DO A LOT OF LUMBAR PUNCTURES FOR CHILDREN WHO ACTUALLY DON'T HAVE SERIOUS BACTERIAL INFECTION AT ALL. EVERYBODY WOULD LIKE TO GET RID OF THE DIAGNOSTIC CHALLENGE WHICH IS STREP THROAT, AND WE'VE ALSO HAD PROMISING WORK ON NON-ALCOHOL FATTY LIVER DISEASE WHERE DIAGNOSTICS IS LIVER BIOPSY AND OBVIOUSLY MANY OF US WOULD LIKE TO GET RID OF THAT AS WELL. AND IN PARTICULAR, AS WE THINK ABOUT ROLLING OUT THESE DIAGNOSTICS, TO ME IT'S VERY IMPORTANT TO BEGIN TO ASK THE QUESTION OF WHERE THESE VOLATILES COME FROM IN THE FIRST PLACE. SO SOME OF THE VOLATILES WE SEE IN MALARIA WE THINK ACTUALLY COMES FROM THE PARASITE BUT SARS-COV-2 DOESN'T MAKE ITS OWN VOLATILES, IT'S CLEARLY HOST RESPONSE WE'RE SEEING. AND I ALSO THINK SOME OF THE BREATH BIOMARKERS THAT ARE PRESENT IN THE BREATH OF NORMAL HEALTHY CHILD IS ACTUALLY COMING FROM THE MICROBIOME. AND SO WE RECENTLY RECEIVED FUNDING AND ARE JUST BEGINNING TO STAND UP A NEW STUDY TO REALLY LOOK AT WHETHER OR NOT THE BREATH IS TELLING US MORE ABOUT WHAT'S GOING ON IN TERMS OF THE COMPOSITION AND METABOLITE PROFILE OF THE BIOME. BEFORE AND AFTER THEY RECEIVE ANTIBIOTICS FOR FEVER TO SEE IF WE CAN SEE HOW CHANGES IN THE FECAL MICROBIOME ARE REFLECTED IN CHANGES IN BREATH VOCs. SO THANK YOU SO MUCH FOR YOUR TIME AND ATTENTION. AND I LOOK FORWARD TO HEARING QUESTIONS. >>THANK YOU, DR. JOHN. AND NOW WE WILL HAVE OUR FINAL PRESENTATION FROM DR. KENNETH DODGE. IT IS MY DELIGHT TO WELCOME DR. DODGE TO THIS VIRTUAL PODIUM. HE IS THE DISTINGUISHED PROFESSOR OF PUBLIC POLICY AND PROFESSOR OF PSYCHOLOGY AND NEUROSCIENCE AT DUKE UNIVERSITY. HE STUDIES EARLY CHILDHOOD DEVELOPMENT, THE PREVENTION OF VIOLENT BEHAVIOR IN CHILDREN AND THE FAMILY, AND PUBLIC POLICIES TO IMPROVE POPULATION OUTCOMES FOR COMMUNITIES. HE'S TRAINED AS A CLINICAL AND DEVELOPMENTAL PSYCHOLOGIST. HE EARNED HIS PH.D. IN PSYCHOLOGY AT DUKE UNIVERSITY. HE IS THE FOUNDING EMERITUS DIRECTOR FOR THE DUKE CENTER FOR CHILD AND FAMILY POLICY. HE HAS PUBLISHED MORE THAN 500 SCIENTIFIC ARTICLES THAT HAVE BEEN CITED MORE THAN 150,000 TIMES. HE WAS ELECTED TO THE NATIONAL ACADEMY OF MEDICINE IN 2015. AND AGAIN, PLEASE JOIN ME IN WELCOMING DR. DODGE TO THE PODIUM. >>THANK YOU, VALERIE, FOR THAT VERY KIND INTRODUCTION. AND THANK YOU, I WANT TO PERSONALLY THANK YOU, VALERIE, FOR YOUR GUIDANCE AND SUPPORT OF MY WORK OVER MANY YEARS. IT HAS MEANT A LOT TO ME. I WOULD LIKE TO TALK WITH YOU ALL TODAY ABOUT ACHIEVING POPULATION IMPACT AS DISPARITY ELIMINATION IN EARLY CHILD DEVELOPMENT AND SUCCESS THROUGH A CONCEPT OF UNIVERSAL FAMILY PRIMARY CARE. AS I DESCRIBE THIS WORK, I WANT TO CONGRATULATE NICHD ON THIS ANNIVERSARY AND GIVE THANKS TO NICHD FOR ITS YEARS OF REPORT THROUGH SEVERAL R01 GRANTS THAT HAVE PROVIDED SUPPORT FOR THE WORK I WILL DESCRIBE TO YOU. I WANT TO START WITH A SOBERING FACT. FAMILIES AND YOUNG CHILDREN IN THE UNITED STATES ARE IN GREAT PERIL. IN SPITE OF OUR COLLECTIVE WEALTH, UNITED STATES STANDS AMONG THE WORST AMONG DEVELOPED COUNTRIES IN MATERNAL MORTALITY AND EARLY CHILDHOOD MORTALITY. IT GOES BEYOND MORTALITY. OUR RATES OF CHILD ABUSE ARE EXTRAORDINARILY HI. 22% WILL BE REPORTED TO CHILD PROTECTIVE SERVICES FOR NEGLECT BEFORE THEIR FOURTH BIRTHDAY, AND KINDERGARTEN READINESS IS A MAJOR PROBLEM IN THAT MORE THAN A THIRD OF CHILDREN COME TO SCHOOL UNPREPARED FOR KINDERGARTEN. WORSE ARE DISPARITIES IN FAMILY WELL-BEING. THIS GRAPH HERE, YOU CAN SEE THAT EARLY CHILDHOOD MORTALITY IS OFFER TWICE AS HIGH AMONG BLACK CHILDREN AS IT IS AMONG NON-HISPANIC WHITE CHILDREN. IN THE MIDDLE GRAPH, YOU SEE LACK OF KINDERGARTEN PREPAREDNESS IS A MAJOR PROBLEM WITH LOW INCOME CHILDREN, HAVING OVER TWICE AS HIGH RATES OF LACK OF READINESS AT KINDERGARTEN TRI KINDERGARTENENTRY, AND ON THE RE CHILD ABUSE STATISTICS WITH RATES BEING THREE TIMES AS HIGH AMONG BLACK CHILDREN OVER WHITE CHILDREN. SO HOW IS IT THAT SOME FAMILIES SUCCEED AND SOME FAMILIES FAIL, BEGINNING AT THE MOMENT OF BIRTH? FOR THOSE WHO ARE PARENTS IN THE AUDIENCE, YOU MIGHT REMEMBER THE DAY YOUR FIRST CHILD WAS BORN. I REMEMBER WHEN MY SON GRAHAM WAS BORN. IT WAS THE MOST EXHILARATING DAY OF MY LIFE. IT WAS ALSO THE MOST FRIGHTENING DAY OF MY LIFE BECAUSE MY WIFE AND I DID NOT HAVE A CLUE FOR HOW WE WOULD SUCCEED. IN SPITE OF OUR EDUCATION, IN SPITE OF OUR COMPARATIVE WEALTH, WE WERE ALONE AND LOST AT SEA. AT LEAST THAT'S WHAT I REMEMBER. SO WE BEGAN OUR FIRST STUDY OF PREDICTION OF CHILD ABUSE IN FAMILIES BY FOLLOWING 500 PREGNANT WOMEN FROM THE TIME OF PREGNANCY THROUGH AGE 24 MONTHS, IN ORDER TO IDENTIFY PROCESSES AND PREDICTORS OF EARLY CHILD ABUSE IN THE FIRST SEVERAL YEARS. WE COLLECTED A LOT OF INFORMATION ABOUT DEMOGRAPHIC INDICATORS, POVERTY, PARENTAL EDUCATION, ET CETERA, AND INDEED THOSE ARE PREDICTORS OF CHILD ABUSE, BUT WHAT STRUCK US EVEN MORE SO WAS THAT CHILD ABUSE OCCURS ACROSS INCOME SPANS AND ACROSS EVERY GROUP THAT WE STUDY. FURTHERMORE, OUR ASSESSMENTS OF CLINICAL INDICATORS WERE MUCH STRONGER PREDICTORS TO ACCOUNT FOR THE DEMOGRAPHIC FACTORS, BUT ALSO TO PREDICT CHILD ABUSE TO A MUCH STRONGER DEGREE THAN DID THE DEMOGRAPHIC FACTORS. 94% OF FAMILIES AT BIRTH REPORTED TO US A RISK FACTOR, A NEED IN THEIR LIVES THAT MIGHT DISPOSE THEM TO BE AT RISK FOR CHILD ABUSE, NOT ALL DID, BUT THE RISK FACTORS THAT OCCUR ACROSS DEMOGRAPHIC GROUPS ARE DIVERSE. SOME FAMILIES CAME TO THE RISK THROUGH MATERNAL DEPRESSION, POSTPARTUM, OR ANXIETY, OR PERHAPS A SUBSTANCE ABUSE PROBLEM. OTHER FAMILIES CAME TO THAT RISK THROUGH DIFFICULTIES IN PARENTING SKILLS AND ATTRIBUTIONS THEY MAKE ABOUT THEIR INFERENCE. SOME COME TO THIS PROBLEM THROUGH LACK OF SOCIAL SUPPORT. AND FINALLY, SOME COME TO RISK THROUGH LACK OF ACCESS TO GOOD QUALITY HEALTHCARE OR COMMUNITY RESOURCES TO SUPPORT THEM. SO WHAT IS THE SOLUTION? IF RISK IS DIVERSELY DISTRIBUTED ACROSS GROUPS, AND YET THE PRECISE PSYCHOSOCIAL FAMILY PROBLEM THAT LENDS RISK IS VARIABLE ACROSS FAMILIES, HOW DO WE DEVELOP A PREVENTIVE INTERVENTION SYSTEM TO LOWER THE POPULATION RATE OF CHILD ABUSE OUTCOMES? THE SOLUTION THAT WE CAME UPON AFTER MANY YEARS OF TRYING OTHER SOLUTIONS IS A COMPREHENSIVE SYSTEM OF WHAT WE CALL FAMILY PRIMARY -- PRIMARY FAMILY CARE. WE CAN LEARN LE SOBS FROM OTHER SYSTEMS OF CARE THAT I BRIEFLY WANT TO MENTION. FIRST, WE IN THIS UNITED STATES, 200 YEARS AGO, DEVELOPED THE FIRST K-12 EDUCATION AND THEN AS A SYSTEM IT HAS SEVERAL COMPONENTS. IT'S UNIVERSAL, EVERY CHILD IS OFFERED PUBLIC EDUCATION. BUT IT'S NOT DELIVERED IN THE PRECISE SAME WAY. THERE IS DESCREEN SCREENING GOING ON TO INDIVIDUALIZE FAMILY CARE AND CARE WITHIN THE EDUCATIONAL SYSTEM. THEY'RE SCREENING FOR LEARNING DISABILITIES, FOR DIFFERENT KINDS OF EMOTIONAL NEEDS AND SUPPORT. THERE'S EVEN SCREENING FOR NUTRITION PROBLEMS AND SOLUTIONS AND SUPPORTED BREAKFAST AND LUNCH PROGRAMS. THIS IS ALL BASED IN AN INFRASTRUCTURE THAT INCLUDES SPECIAL EDUCATION, COUNSELORS, NURSES, NUTRITIONISTS SO THERE'S AN INFRASTRUCTURE OF SUPPORT. THE SECOND EXAMPLE OF A SYSTEM OF CARE IS WHAT WE DO IN HEALTHCARE IN THIS UNITED STATES. WE HAVE UNIVERSAL ACCESS HOPEFULLY, CERTAINLY ONE DOESN'T NEED TO BE SICK TO GO SEE A PEDIATRICIAN. WE HAVE WELL-BABY CARE. BUT THAT PRIMARY CARE PHYSICIAN DOES IS TO SCREEN FOR A VARIETY OF PROBLEMS AND TO CONNECT THAT MAYBE AS NEEDED WITH AN INFRASTRUCTURE OF SUPPORTS. IT MAY BE A NEUROSURGEON, IT MAY BE A NUTRITIONIST, IT MAY BE A PHYSICAL THERAPIST. SO THERE ARE THESE THREE COMPONENTS TO A UNIVERSAL SYSTEM OF CARE OF UNIVERSAL ACCESS, SCREENING FOR INDIVIDUAL NEEDS, AND CONNECTION TO AN INFRASTRUCTURE OF COMMUNITY SUPPORTS. SO WE THOUGHT ABOUT WHY IS THERE NOT A SYSTEM OF CARE FOR FAMILIES OF YOUNG CHILDREN IN THESE UNITED STATES? AND RESEARCHERS SUGGESTED THREE DIFFERENT SOURCES. FIRST IS A CULTURAL MYTH OF THIS STAY-AT-HOME MOM WHO CAN DO IT ALL. DON'T KNOW IF THAT WAS EVER TRUE BUT IT'S CERTAINLY NOT TRUE TODAY AND MOST MOTHERS -- MOST ADULTS LIVING IN HOMES OF YOUNG CHILDREN ARE TRYING TO BE EMPLOYED OUTSIDE HOME OR NEED TO BE EMPLOYED OUTSIDE THE HOME. THE SECOND SOURCE OF THIS LACK OF SYSTEM OF CARE WAS WITH DEVELOPMENTAL SCIENTISTS AND PROFESSIONALS WERE SIMPLY WRONG. AMERICAN MEDICAL ASSOCIATION FOR YEARS OPPOSED HOME VISITING OF FAMILIES, EDUCATORS OPPOSED EARLY EDUCATION AS UNNECESSARY UNTIL CHILDREN ACHIEVED THE AGE OF REASON, AND DEVELOPMENTAL SCIENTISTS DID NOT UNDERSTAND NEURAL DEVELOPMENT. OF COURSE WE'VE CHANGED WITH ALL OF THE ADD VOON ADVANCES SUPPORY NICHD IN UNDERSTANDING OF EARLY BRAIN DEVELOPMENT, EARLY -- WHAT I CALL INSIDIOUS RACISM, IF WHITE FAMILIES ARE ABLE TO FIND THEIR NEEDS WITHOUT A SYSTEM, THEN THEY WOULD NOT SUPPORT THE CREATION OF A SYSTEM AND THOSE WHO ARE DISADVANTAGED THEN ARE LEFT OUT IN THE COLD. SO WE WORKED FOR YEARS TO DEVELOP UNIVERSAL PRIMARY FAMILY CARE THAT WE NOW CALL FAMILY CONNECTS. WE BEGAN FAMILY CONNECTS IN 2001 THROUGH A COMMITMENT BY THE DUKE ENDOWMENT THAT HAD THREE COMPONENTS. FIRST IS TO SET OUR TARGET ON THE ACHIEVING POPULATION OUTCOME OF CHILD ABUSE, AND COST REDUCTION AND DISPARITY REDUCTION. SECOND, THROUGH AN INTERVENTION THAT'S PROTOCOL, THAT'S RELIABLE AND REPLICABLE MODEL BASED ON DEVELOPMENTAL SCIENCE AND THIRD RANDOMIZED CONTROL TRIALS. SO UNIVERSAL FAMILY CONNECTS IS A PARADIGMATIC SHIFT THAT HAS THREE PILLARS. FIRST UNIVERSAL, TO INVITE THEMSELVES INTO THE HOME FOR ONE TO THREE VISITS. 80% OF FAMILIES AND COMMUNITY ACCEPT THAT OFFER. DURING THOSE VISITS, THE NURSE CONNECTS WITH THE FAMILIES TO SCREEN FOR NEEDS AND MATCH WITH COMMUNITY RESOURCES. AND THE THIRD IS COMMUNITY RESOURCE INFRASTRUCTURE IN DURHAM, NORTH CAROLINA. WE HAVE AN INFRASTRUCTURE OF OVER 400 AGENCIES THAT SUPPORT FAMILIES AT BIRTH, AT MODEST COST. THIS SLIDE GIVES YOU AN EXAMPLE OF SOME OF THE KINDS OF NEEDS THAT OUR NURSES IDENTIFY WITH FAMILIES. ON THE LEFT ARE THE RISK DOMAINS FOR EXAMPLE, ONE FAMILY MIGHT HAVE A NEED FOR A HOUSING LOAN, HOUSING SUPPORT. AND ON THE RIGHT SIDE IS THE POSSIBLE COMMUNITY CONNECTION THAT THE NURSES TRAIN TO MATCH TO THE IDENTIFICATION OF THAT NEED. AND THAT MIGHT BE CONNECTING THE FAMILY WITH THE HOUSING AUTHORITY OR SOCIAL SERVICES OR THE NEED MIGHT BE FOR POSTPARTUM DEPRESSION INTERVENTION AND THE CONNECTION IS THROUGH MATERNAL MENTAL HEALTH SERVICES. IN ADDITION TO THIS BEING A MANUALIZED PROTOCOL, OUR NURSES ATTEND TO SPECIFIC NEEDS IN DIFFERENT COMMUNITIES, AND THIS GRAPH IS TO REMIND ME TO REMIND YOU THAT OUR NURSES ARE TRAINED TO DO THAT, SO FOR EXAMPLE, IN DURHAM, NORTH CAROLINA, OUR NURSES REACH FAMILIES TO SUPPORT THEM IN RESPONDING TO COMMUNITY RACIAL INJUSTICE TO HELP MOTHERS IDENTIFY THAT THEY'RE THE OBJECT OF INJUSTICE AND HOW TO RESPOND TO NAVIGATE THEIR WAY THROUGH A SYSTEM. ON THE RIGHT SIDE, THE QUOTE IS TO REMIND ME THAT NURSES ADAPTED DURING COVID. INSTEAD OF IN-PERSON HOME VISITS, WE HAD TO ADAPT A VIRTUAL VISITATION AND SUCCESSFULLY DID THAT AND THANKFULLY WE'RE NOW RETURNING TO HOME VISITS NOW. WANT TO MOVE TO EVALUATION. SO FIRST RANDOMIZED CONTROL TRIAL. WE RANDOMLY ASSIGNED EVERY DURHAM RESIDENT BIRTH OVER AN 18-MONTH PERIOD INTERVENTION OR CONTROL CONDITION, ALMOST 5,000 FAMILIES. WE IMPLEMENTED THE INTERVENTION OF THOSE ASSIGNED TO THAT WITH STRONG PARTICIPATION AS I SAID 80% PARTICIPATED IN 86% OF PARTICIPATING INDIVIDUALS ACTUALLY COMPLETED THE PROGRAM. THEY IDENTIFIED A WIDE VARIETY OF NEEDS. AND THEY THEN -- LET'S SEE. IMPLEMENTED AN EVALUATION TRIAL IN WHICH WE CAME ALONG AT AGE SIX MONTHS THROUGH CONDITION-BLINDED INTERVIEWS AND FOLLOWED UP FAMILY THERE'S 5 YEARS OF AGE WITH REVIEW OF ADMINISTRATIVE RECORDS. OUR DATA ANALYTIC MODEL IS AN INTENT TO TREAT REGRESSION MODEL WITH COVARIATES. SEVERAL FINDINGS. FIRST OF ALL, OUR PROXIMAL GOAL WAS TO CONNECT FAMILIES WITH COMMUNITY AGENCIES. YOU CAN SEE HERE COMPARING THE CONTROL CONDITION FAMILIES ON THE LEFT TO FAMILIES RANDOMLY ASSIGNED INTENT TO TREAT ON THE RIGHT, YOU CAN SEE THAT THOSE ASSIGNED TO INTERVENTION OF HIGHER COMMUNITY CONNECTION RATES AT AGE 6 MONTHS, AMONG BOTH BLACK AND WHITE FAMILIES. SECOND GOAL OF INTERVENTION IS TO IMPROVE MATERNAL SELF-EFFICACY, REDUCE ANXIETY, REDUCE DEPRESSION. AND RANDOM ASSIGNMENT TO INTERVENTION DID DEGREECE MATERNAL ANXIETY AND CLOSES RACIAL DISPARITY IN MATERNAL ANXIETY SO THIS IS WONDERFUL NEWS FOR US THAT WE'RE HAVING IMPACT BUT THAT WE'RE ALSO REDUCING DISPARITIES IN THIS IMPORTANT OUTCOME. REDUCING MATERNAL ANXIETY, IMPROVING PARENTAL SELF-EFFICACY THEN IS RELATED IN DECREASES TO EMERGENCY MEDICAL CARE THAT WE WERE ABLE TO IDENTIFY, ABOUT A THIRD LOWER RATE OF EMERGENCY MEDICAL CARE EPISODES AND COSTS COMPARED TO THOSE ASSIGNED TO CONTROL, AND WE WERE ABLE TO CLOSE THE RACE DISPARITY IN EMERGENCY MEDICAL CARE BY A MODEST AMOUNT. THIS PUTS US IN THE RIGHT DIRECTION BUT NOWHERE NEAR WHERE WE NEED TO BE AND WILL ULTIMATELY WANT TO BE. ASSIGNMENT TO FAMILY CONNECTS INTERVENTION, CHILD ABUSE INVESTIGATIONS BY 39%, AND WE'RE ABLE TO CLOSE THE RACE DISPARITY IN CHILD ABUSE INVESTIGATIONS BY 28%. SO WE'RE GRATIFIED BY THESE FINDINGS. WE WANTED TO TURN THOSE INTO A BENEFIT COST RATIO, AND YOU CAN SEE HERE THAT FOR EVERY DOLLAR OF INVESTMENT IN FAMILY CONNECT INTERVENTION, WE WERE ABLE TO REDUCE EMERGENCY MEDICAL CARE COSTS BY OVER $3. WE'RE VERY GRATIFIED BY THIS. WE NEEDED TO REPLICATE THIS TO BE SURE, SO WE CONDUCTED A SECOND RANDOMIZED CONTROL TRIAL VERY SIMILAR TO THE FIRST, BUT WITH A SMALLER NUMBER OF FAMILIES. WE IMPLEMENTED THE INTERVENTION. AGAIN WITH STRONG PARTICIPATION RATES AND A HIGH RATE OF IDENTIFYING FAMILY NEEDS. SAME KINDS OF OUTCOME MEASURES AND THE SAME KINDS OF DATA ANALYTIC INTENT TO TREAT MODEL. WE FOUND AGAIN, I'LL JUST HAVE A FEW SLIDES HERE, THAT RANDOM ASSIGNMENT TO THE FAMILY CONNECTS INTERVENTION DECREASED THE NEED FOR EMERGENCY MEDICAL CARE BY 32% AND CLOSES THE RACE DISPARITY BY A QUARTER. AGAIN MOVING IN THE RIGHT DIRECTION. FINALLY, FAMILY CONNECTS ALSO DECREASED CHILD ABUSE INVESTIGATIONS IN THIS TRIAL BY 44%, AND WE WERE ABLE TO REDUCE THE RACE DISPARITY IN CHILD ABUSE INVESTIGATIONS BY 57%. SO WHERE DOES THIS LEAD US? IN TWO TREXES. DIRECTIONS. ONE IS WE ARE NOW DISSEMINATING THE INTERVEN INTERVENTION COMMUE AROUND THE NATION AS WE CONTINUE TO LEARN. AND FINALLY, WE'RE CONTINUING OUR RESEARCH AND INNOVATION AND DEVELOPMENT OF INTERVENTIONS. ONE OF THE STRONGEST MESSAGES THAT FAMILIES GAVE US AS WE DID THESE INTERVENTIONS IS THAT THEY WANTED US TO START EARLIER, BEFORE BIRTH. AND SO WE HAVE DEVELOPED AN INTERVENTION NOW THAT BEGINS WHEN A WOMAN COMES IN TO PRENATAL CARE, OB-GYN CLINICS, WHICH WE DO THE SAME KINDS OF THINGS, TO CONNECT WITH THE FAMILY, IDENTIFY NEEDS AT THAT TIME AND CONNECT THEM TO COMMUNITY RESOURCES TO ADDRESS THOSE NEEDS. FAMILIES ALSO WANT US TO EX-TEND BEYOND BIRTH AND SO WE ARE IMPLEMENTING AN INTERVENTION WHICH LIKE PRIMARY CARE COME BACK EVERY YEAR AT THE CHILD'S BIRTHDAY AS 12 MONTHS, 24 MONTHS, 36 MONTHS, T TO DO THE SAME KIND OF THING, CONNECTING WITH THE FAMILY, IDENTIFYING NEEDS AT THAT AGE-SPECIFICALLY PERIOD AND CONNECTING FAMILIES WITH COMMUNITY RESOURCES TO ADDRESS THOSE NEEDS. WE'RE NOW IN THE PROCESS OF EVALUATION FOR A RANDOMIZED CONTROL TRIAL THAT SUNDAYWAY NOW. IS UNDERWAYNOW. WE HOPE FOR CONTINUED SUCCESS AND FOR NIH SUPPORT OF THIS WORK AND WE'RE STILL AT IT. THANK YOU VERY MUCH. >>AND THANK YOU, DR. DODGE, AND PLEASE JOIN ME IN THANKING ALL OF OUR PANELISTS FOR SUCH PROVOCATIVE AND COMPELLING DISCUSSIONINGS. NOW IT'S TIME FOR THE AUDIENCE TO PARTICIPATE TO BRING ALL OF YOU INTO THE MIX. WE HAVE SEVERAL QUESTIONS THAT HAVE COME UP DURING THE TALKS, AND I'M GOING TO START FIRST WITH A QUESTION FOR DR. CHUNG. AN AUDIENCE MEMBER ASKS THAT THE RELATIONSHIPS AMONG RESEARCHERS IN THE ASD COMMUNITY HAS EVOLVED OVER THE LAST FEW DECADES. HOW CAN RESEARCHERS AND FAMILIES CONTINUE TO WORK TOGETHER TO ADVANCE RESEARCH ON ASD? HAVE THERE BEEN DISCUSSIONS OR CONSIDERATIONS ABOUT APPLYING THE EHR DASHBOARD AND -- TO OTHER CONDITIONS? DR. CHUNG. >>THAT'S A GREAT QUESTION. SO AUTISM IS COMPLICATED BECAUSE MUCH OF THE -- MANY OF THE MANIFESTATIONS AND WHAT'S IMPORTANT IS NOT PART OF THE MEDICAL SYSTEM. SO IT'S IMPORTANT TO BE ABLE TO GET THE FULL PICTURE OF INDIVIDUALS AND THAT INCLUDES BEHAVIORS THAT MIGHT NOT BE DOCUMENTED BUT ARE PART OF THE SCHOOL DAY, PART OF THE HOME DAY, SO WE'RE ALSO STARTING TO EXPLORE NOW OTHER MORE GRANULAR WAYS OF COLLECTING DATA. LET ME SAY, THOUGH, THAT IT STARTS FIRST WITH THE COMMUNITY, SO THE FIRST THING WE DO IS LISTEN TO MEMBERS OF THE COMMUNITY, WHETHER THEY BE PARENTS OR INDIVIDUALS ON THE SPECTRUM, TO UNDERSTAND THEIR PRIORITIES AND THEIR NEEDS, AND THEN THINK OF THE RESEARCH QUESTIONS AND HOW TO DESIGN THE RESEARCH BASED ON THAT. IT COMPLICATED BECAUSE THE SPECTRUM IS TO WIDE AND THE NEEDS ARE SO DIVERSE. INDIVIDUALS THAT HAVE WHAT SOME CALL PROFOUND AUTISM WHO ARE NON-VERBAL, SELF-INJURIOUS, HAVE A DIFFERENT SET OF NEEDS THAN OTHER INDIVIDUALS WHO MIGHT BE ANXIOUS BUT REALLY QUITE GIFTED, AND NOT HAVE ANY MEDICAL ISSUES. SO WITH THAT, THERE ARE NEW WAYS TO BE ABLE TO USE DIGITAL DATA AS WELL, SO INDIVIDUALS, FOR INSTANCE, HAVE WEARABLE DEVICES, CAN REPORT IN TERMS OF OTHER SYMPTOM TRACKERS OR OTHER WAYS OF BEING ABLE TO PROVIDE DATA, BUT ALL OF THOSE, OF COURSE, VOLUNTARY IN TERMS OF DOING THIS. THERE ARE OTHER WAYS TO COLLECT EEG DATA AS ANOTHER EXAMPLE IN TERMS OF INDIVIDUALS WHO MAY HAVE CO-OCCURRING EPILEPSY AS A PORTION OF THIS. SO THE BASIC ANSWER IS SUFFICE TO SAY IT'S COMPLICATED AND THERE ARE MULTIPLE DIMENSIONS AND SORT OF SUBSTUDIES WITHIN STUDIES TO MEET THE NEEDS OF THOSE PARTICULAR COMMUNITIES. BUT WITHIN DOING THIS, I THINK OUR PRIMARY RESPONSIBILITY IS TO KEEP DATA PRIVATE AND TO ADDRESS THE NEEDS OF INDIVIDUALS AS THEY REPRESENT THEM TO US. >>WONDERFUL, THANK YOU. DR. JOHN, A QUESTION HAS COME IN FOR YOU. AND I WOULD IMAGINE THAT THERE ARE GOING TO BE LOTS OF QUESTIONS ABOUT THE DOGS THAT YOU SHOWED ON ONE OF YOUR SLIDES. SO THIS IS THE START IN LEADING TOWARD THAT. DOES THE PRESENCE OF MIS-C BIOMARKERS IN THE BREATH OFFER ANY INCLUDES ABOUT WHY A CERTAIN CHILD'S COVID INFECTION PROGRESSES TO MIS-C IN THE FIRST PLACE? >>THANKS, THAT'S A GREAT QUESTION. AND THAT IS REALLY SOMETHING THAT WE'RE WORKING ON HARD BECAUSE WE REALLY DO >>WE THINK THE KINDS OF THINGS WE'RE SEEING IN THE BREATH GIVE A CLUE TO WHAT THE UNDERLYING BIOLOGY IS. RIGHT NOW IT'S NOT CLEAR HOW ONE CHILD SO GETS SARS COV2 NEVER GOES ON TO HAVE MISC AND SOME CHILDREN GO MISSED. AND WHAT WE SEE WITH SOME OF OUR BREATH BIOMARKERS IS REFLECTIVE OF THE INTESTINAL INFLAMMATION WHICH CHARACTERIZES THE CONDITION WITH VOMITING AND DIARRHEA. IT OVERLAPS WITH OUR INTEREST WITH WHETHER OR NOT BREATH AND MICROBIAL PRODUCTS REFLECTIVE OF GUT INFLAMMATION AND I THINK THAT MIGHT BE PART OF WHAT WE'RE SEEING IN TERMS OF THE UNDERLYING BIOLOGY. >>THANK YOU. AND NOW, DR. DODGE, AN AUDIENCE MEMBER IS POSING THIS QUESTION TO YOU, IT CAN BE DIFFICULT TO ENGAGE CERTAIN FAMILIES AND COMMUNITIES IN EARLY AND CONTINUING CARE. HAS YOUR RESEARCH FOUND ANY BEST PRACTICES FOR REACHING OUT TO THESE FAMILIES AND COMMUNITIES TO KEEP THEM COMING BACK? THAT'S A REALLY IMPORTANT QUESTION. >>IT IS A VERY IMPORTANT QUESTION AND TERRIFIC QUESTION. WE ARE LEARNING -- WE STILL HAVE A LONG WAY TO GO AS A DESCRIBED ABOUT 81% OF ALL BIRTHS IN A COMMUNITY TYPICALLY ACCEPT OUR INVITATION TO COME INTO THEIR HOME FOR HOME VISITS AND BEGIN TO ENGAGE WITH US. IN ORDER TO HAVE THAT SUCCESS OR TO DO EVEN BETTER, WE NEED TO BE HUMBLE IN OUR APPROACH AND NOT COME IN AS ARROGANT EXPERTS BUT INTERESTED NEIGHBORS WE DRY TO UNDERSTAND OUR FAMILIES AND OUR COMMUNITIES. WE EMPLOY TALENTED REGISTERED NURSES WHO ARE TRAINED TO UNDERSTAND FAMILIES. IT TAKES A CERTAIN TYPE OF PERSON TO DO THAT AND TRY TO MATCH THE CHARACTERISTICS OF OUR NURSES WITH THE CHARACTERISTICS OF OUR FAMILIES IN TERMS OF GEOGRAPHICALLY WHERE THEY COME FROM AND AGE AND ETHNICITY AS BEST WE CAN. THOSE ARE SOME OF THE BEST PRACTICES. BUT IT REALLY COMES DOWN TO A HUMAN RELATIONSHIP WE TRY TO CONNECT AND CREATE WITH THEM RIGHT AWAY. THERE'S AN AWFUL LOT MORE TO LEARN THERE. WE TRY TO BE COLLABORATIVE WITH COMMUNITY AGENCIES AND PEDIATRI PEDIATRICIANS, MENTAL HEALTH UNDERSTANDS AS WELL AND THEY CAN PROVIDE A LOT OF SUPPORT FOR THE WORK WE DO. >>AND I'M GOING OFF SCRIPT A LITTLE BIT HERE, DR. CHUNG YOU MENTIONED ABOUT COMMUNITY ENGAGEMENT WITH YOUR WORK. HOW DO YOU KEEP THAT GOING? >>SO AS I THINK ALL OF US IF YOU LISTEN TO US AND WE ALL WORK WITH OUR COMMUNITIES. WE LEARN TOGETHER. IT'S A COLLABORATIVE PROCESS AND ITERATIVE PROCESS. I DON'T THINK WE WOULD KNOW ALL THE ANSWERS AS WE START THIS. I LIKE THE USE OF THE TERM HUMBLE, I THINK THAT'S EXACTLY WHAT IT IS AND WE'RE LEARNING TOGETHER AS WE DO THIS AND TOGETHER WE'RE STRONGER. I THINK OF OURSELVES -- MYSELF AT LEAST AS ONE OF THEM AS A PARENT AND AS A PARENT I CARE ABOUT CHILDREN AND SHARE THE TRAINING AND PARENTS SHARE JUST AS MUCH AS THEIR ON THE JOB TRAINING WITH ME AND WE ALL DEVELOP BEST PRACTICES AND TECHNOLOGIES CHANGE AS VIRUSES CHANGE WE HAVE TO ADAPT AND WE HAVE TO BE ABLE TO PIVOT AS WE'RE DOING THIS. I JUST THINK WE'RE ALL BASICALLY JUST PEOPLE AND ALL TRYING TO HELP EACH OTHER OUT. >>YES, INDEED. YES, INDEED. AND BACK TO YOU, DR. CHUNG, HAVE YOU LOOKED AT POTENTIAL USE OF BREATH MARKERS IN PREGNANCY FOR EARLY IDENTIFICATION OF SOME PREGNANCY CONDITIONS? >>WE HAVE JUST BEGUN HAVING CONVERSATIONS ABOUT THIS. THIS IS SOMETHING WE'RE INTERESTED IN DOING. OUR BACKGROUND AND INTERESTS STARTED OUT WITH MALARIA AND PEDIATRIC-BASED DIAGNOSTICS. AS WE BEGIN TO UNDERSTAND THE BIOLOGICAL ORIGIN OF THE BREATH BIOMARKERS AND WHAT THEY CAN TELL US ABOUT THE UNDERLYING BIOLOGY OF A PERSON, I THINK INVESTIGATING PREGNANCY IS PARTICULARLY GOING TO BE INTERESTING. >>INDEED. AND I HAVE A FOLLOW-UP QUESTION FOR YOU DR. JOHN. HAVE YOU IDENTIFIED NON POOCH DEVICES ON PAR WITH POOCH'S SENSITIVITY OR EFFECTIVENESS AT DETECTING BREATH MARKERS? >>YES, AS MUCH AS I'D LIKE TO HAVE A DOG IN MY CLINIC IT'S PROBABLY NOT THE LONG-TERM POINT OF CARE DEVICE WE'RE LOOKING FOR. SO THERE IS ACTUALLY AN FDA APPROVED BREATH DIAGNOSTIC DEVICE FOR SARS COV2 ALREADY WHICH IS A MINI MASS SPECTROMETER AND WE'RE LOOKING FOR A SENSOR ARRAY. YOU CAN IMAGINE THESE AS METAL MATERIALS THAT BIND VOLATILES AND SO YOU BLOW OVER THEM AND THE VOLATILES BIND TO THE SENSOR AND CHANGE THE RESISTANCE AND THE COMPUTER CAN TELL WHAT HAS BEEN FOUND. SO THOSE KIND OF TECHNOLOGIES I THINK ARE MUCH MORE AMENABLE TO THE POINT OF CARE USE WE ENVISION FOR THE LONG-TERM USE OF THIS KIND OF TECHNOLOGY. >>WONDERFUL. THANK YOU. DR. DODGE, THIS NEXT QUESTION THAT HAS COME IN IS FOR YOU. THANK YOU SO MUCH FOR THE SPECTACULAR WORK AND PRESENTATION ON IMPLEMENTING EVIDENCE-BASED SUPPORT OF YOUNG FAMILIES. APPRECIATING THE POWER AND IMPACT OF HOME VISITATION AND WONDERING ABOUT THE UNMET MENTAL HEALTH NEEDS AND GET ADVERSE EARLY CHILDHOOD EXPERIENCE COULD BE PART OF A PREVENTION MODEL. SO WHETHER UNMET MENTAL HEALTH NEEDS SHOULD BE OR COULD BE PART OF A PREVENTION MODEL. >>THANK YOU, ABSOLUTELY. THEY'RE A CORE PART OF THE MODEL. EVIDENCE-BASED INTERVENTIONS FOR POSTPARTUM DEPRESSION, FOR MATERNAL ANXIETY, FOR SUBSTANCE ABUSE, FOR DOMESTIC VIOLENCE, FOR SKILL DEFICITS IN PARENTING ARE ALL IMPORTANT PART. WHAT'S IMPORTANT TO KNOW WITH THE SYSTEM OF CARE IS THAT IT IS NOT AN EITHER/OR CONDITION. IT'S NOT EITHER DOING HOME VISITATION WITH REGISTERED NURSES OR PROVIDING PROFESSIONAL SERVICES IT'S BOTH. IT'S NOT SUBSTITUTE FOR EVIDENCE-BASED MENTAL HEALTH INTERVENTIONS FOR PARENTS. IN FACT, THE OPPOSITE. IT'S MEANT TO CONNECT FAMILIES TO THOSE RESOURCES IN THE COMMUNITY AND IT MUST BE A PART OF A PROCESS OF GROWING THOSE RESOURCES. HERE'S AN EXAMPLE, EARLY ON IN DURHAM IN NORTH CAROLINA WHEN WE BEGAN WE REALIZED THROUGH OUR INTERVIEWS WITH FAMILIES 11% OF MOTHERS POST-BIRTH REPORTED TO US AT THAT TIME THEY HAD A SUBSTANCE ABUSE PROBLEM FOR WHICH THEY WERE READY TO RECEIVE INTERVENTIONS FOR. THEY COULD STAY IN THEIR HOMES WITH THEIR BABY. WE TURNED TO THE COMMUNITY INFRASTRUCTURE AND REALIZED COMMUNITY RESOURCES WERE ONLY -- COULD ONLY SERVE 2% OR 3% OF THE COMMUNITY NEED. WE'RE ABLE TO MATCH UP THIS DISPARITY BY GOING TO THE COUNTY COMMISSIONERS AND POINTING OUT TO THEM THE PROBLEM AND THEY RESPONDED WITH NOT FULLY BUT AT LEAST A MOVE IN THE RIGHT DIRECTION OF INCREASED FINANCIAL RESOURCES FOR EVIDENCE-BASED INTERVENTIONS FOR PARENTS IN THIS MENTAL HEALTH REALM AFTER BIRTH. IT'S NOT AN EITHER/OR BUT BOTH AND IT'S ABOUT GROWING THE EVIDENCE-BASED MENTAL HEALTH INTERVENTIONS. >>YES, AND IT'S SORELY NEEDED AND THANK YOU FOR POINTING THAT OUT. SOMETIMES WE LIKE TO THINK ABOUT THE EITHER/OR AND IT'S AN IMPORTANT TO RECOGNIZE WE NEED IT BOTH/AND. THE NEXT QUESTION IS FOR DR. JOHN, AN AUDIENCE MEMBERS COMMENTS, THANK YOU FOR A VERY NICE PRESENTATION, AND INDICATES YOU MENTIONED YOU WILL BE EVALUATING THE GUT MICROBIOME AND WILL YOU EXPLORE THE ORAL MICROBIOME AND SHORT CHAIN FATTY ACIDS. >>GREAT QUESTION. WE'RE INTERESTED IN ALL OF THIS. THERE'S A SO MANY QUESTIONS. TO ME THE KEY ABOUT UNDERSTANDING WHETHER BREATH IS A USEFUL LONG-TERM TOOL FOR DIAGNOSIS HINGES ON UNDERSTANDING THE BIOLOGICAL ORE GIN OF A BREATH VOLATILES UNDERSTANDING THE BREATH IN THE FIRST PLACE AND WHY THINGS ARE THERE FOR A CERTAIN CONDITION. WE'RE INTERESTED IN NOT JUST THE GUT MICROBIOTA WHICH IS WHAT WE HAVE FUNDING TO LOOK AT BUT INTERESTED IN OTHER ORAL SOURCES AND ORAL MICROBIOTA IS ONE OF THOSE AND WE'RE HOPING TO TAG ON TO SOME EXISTING STUDIES TO BE ABLE TO CAPTURE THAT INFORMATION AND SHORT CHAIN FATTY ACIDS ARE ALSO OF INTEREST. NOT ALL WIND UP IN THE BREATH COMPLETELY UNMODIFIED BUT THERE'S SOME PRODUCTS WE'RE INTERESTED IN AND WE'RE INTERESTED AS WELL IN HOST MITOCHONDRIA METABOLISM WE BELIEVE IS A COMPONENT IN THE BREATH WE'RE SEEING. >>THANK YOU FOR THAT RESPONSE. THIS SAY QUESTION FOR ALL OF YOU AND I'LL ASK EACH OF TO YOU COMMENT ON THE QUESTION AS IT RELATES TO YOUR RESPECTED AREAS OF RESEARCH. AN AUDIENCE MEMBER POSES THIS CONTEXT AND QUESTION, GIVEN THE POWERFUL SOCIAL AND ECONOMIC INFLUENCES ON CHILDREN'S DEVELOPMENT THAT PUSH AGAINST OUR BEST EVIDENCE-BASED GUIDANCE, EAT VEN -- VEGETABLES AND DON'T BE VIOLENT HOW CAN WE COMMUNICATE MESSAGES THAT MAY HAVE SOCIAL, BEHAVIORAL, POLITICAL, ETCETERA UNDER TONES? THIS IS ABOUT COMMUNICATING THE SCIENCE. HOW CAN PROVIDERS AND RESEARCHERS EFFECTIVELY COMMUNICATE MESSAGES AND HOW DO WE MAKE SURE OUR RESEARCH IS BEING DISSEMINATED AND COMMUNICATED IN THE WAY THAT THE INTENDED BENEFICIARIES ARE TAKING ADVANTAGE AND CAN RECEIVE THE MESSAGES? WE'LL START WITH YOU, DR. CHUNG AND THEN DR. JOHN AND THEN DR. DODGE. EACH OF YOU TAKE IT. >>THIS IS COMPLICATE AND SINCE COVID I'VE APPRECIATED HOW MUCH MORE COMPLICATED IT IS FOR COMMUNICATION. WHO THE MESSENGER IS IS IMPORTANT. IT'S NOT JUST IS THE MESSAGE BUT MESSENGER AND SOMEONE TRUSTED AND FOR THAT I THINK WE NEED NOT ONE PERSON I THINK THERE'S MANY PEOPLE WHO CAN BE TRUSTED OR UNDERSTOOD BY THE COMMUNITY AND TRUSTED TO BE COMMUNICATORS. SO WITHIN THAT I WON'T SAY THERE'S ANY ONE PERSON OR PROTOTYPE IN TERMS OF DOING THAT BUT DO THINK IT STARTS WITH SOMEONE LIKE THAT. I THINK BEYOND THAT I THINK TOO MANY SCIENTISTS AND PHYSICIANS OR HEALTH CARE INDIVIDUALS GET TOO QUICKLY SPEAKING JARGON AND SPEAKING ABOUT THINGS AT LEVELS THAT ARE NOT READILY UNDERSTANDABLE AND THEY DON'T NEED TO BE. IT IS IMPORTANT TO BE ABLE TO USE LANGUAGE THAT'S PLAIN LANGUAGE AND UNDERSTOOD AND DOESN'T SPEAK DOWN ON ANYONE BUT SIMPLY DOESN'T USE THE TECHNICAL LANGUAGE THAT PEOPLE HIDE BEHIND, I THINK UNFORTUNATELY WE GET LAZY SOMETIMES AND USE THEM AS SHORTCUTS. THERE'S SOME FAMOUS PEOPLE WHO SAID IF YOU REALLY UNDERSTAND SOMETHING YOU OUGHT TO BE ABLE TO EXPLAIN IT TO SOMEONE IN ELEMENTARY SCHOOL AND I THINK THERE'S TIMES WHEN IT TAKES A WHILE TO ABSORB SOMETHING OR LET IT MARINATE IN YOUR HEAD AND THINK ABOUT IT THOUGHTFULLY AND SOMETIMES FAMILIES UNDERSTAND IT FROM ANOTHER FAMILY IN A PRACTICAL CONTEXT AND THEY CAN UNDERSTAND THE VALUE OR IMPORTANCE OF WHAT THAT MEANS AND IT BECOMES NOT SIMPLY AN EXTRACT SCIENTIFIC DISCOVERY BUT BECOMES VERY APPROACHABLE, VERY PERSONABLE AND THAT'S HAPPENED WHEN TIMES WHEN I THINK OF JUST PEOPLE WHO ARE VERY GENEROUS AND SHARED THEIR STORIES WHETHER IT BE ON SOCIAL MEDIA OR TELEVISION SHOWS OR IN NOVELS OR OTHER THINGS. I THINK IN TERMS OF DOING THAT PEOPLE CAN UNDERSTAND THE SCIENCE IN A PERSONAL CONTEXT. >>DR. JOHN. >>YEAH, I THINK DR. CHUNG RAISES SOME CRITICAL POINTS. I THINK THE DIVERSITY OF MESSENGERS IS VERY IMPORTANT AND I THINK ALSO BRINGING ALL OF YOURSELF TO THE MESSAGE I THINK THE INTERPERSONAL MESSAGE IS KEY. THERE'S SOME EVIDENCE THAT FAMILIES, ESPECIALLY FAMILIES WHO HAVE HAD PROBLEMS WITH MISINFORMATION OR STRUGGLING WITH VACCINE HESITANCY REALLY FIND THEIR PRIMARY CARE PHYSICIAN TO BE THEIR TRUSTED MESSENGER AND THIS IS SOMEONE WE TRUSTED TO RECEIVE HEALTH INFORMATION FROM AND THAT'S A PARTICULAR RELATIONSHIP WHERE THAT INTERACTION IS A PLACE WHERE MISINFORMATION CAN BE MORE READILY COMBATTED AND MY OWN EXPERIENCE SPENDING TIME LISTENING AS MUCH AS TALKING TO MEET FOLKS WHO ARE VACCINE HESITANT OR HAVING TROUBLE WITH OTHER MEDICAL MISINFORMATION TRYING TO UNDERSTAND THEIR PERSPECTIVE WHERE THEY'RE COMING FROM IN A NON-JUDGMENTAL WAY AND UNDERSTANDING THEIR BACKGROUND AND HOW IT'S CONTRIBUTING TO THE DECISIONS THEY'RE MAKING WHAT YOU MIGHT OTHERWISE RECOMMEND IS A CRITICAL PLACE TO BEGIN TO COUNTER ACT THOSE MESSAGE. -- MESSAGE. >>THANK YOU. AND KEN. >>I'LL GO NEXT, THANK YOU. WHAT TERRIFIC MESSAGES FROM DR. CHUNG AND DR. JOHN. I'M WRITING DOWN NOTES AS I'M LEARNING. MAYBE I CAN ADD TWO POINTS. ONE ABOUT THE FRAMING OF THE MESSAGE AND ONE ABOUT THE DELIVERY. WE LEARNED EARLY THAT FAMILIES PARTICULARLY MOTHERS IN THE UNITED STATES FEEL THEY MUST DO IT ALONE. THEY MUST BE COMPETENT SOMEHOW ON THEIR OWN WITHOUT COMMUNITY SUPPORT. WHAT WE DEVELOPED WAS A FRAMING OF IT THAT'S A LITTLE BIT OF A PARADOX AND THE IDEA IS WHAT WE TRY TO COMMUNICATE TO MOTHERS IS WE WANT THEM TO BE COMPETENT AND THE WAY TO BE COMPETENT IS TO LEARN HOW TO ASK FOR HELP WHEN YOU NEED IT. RATHER THAN DO IT ALONE. THAT IS A MARK OF COMPETENCE RATHER THAN WEAKNESS IF YOU CAN UNDERSTAND WHEN YOUR FAMILY AND WHEN YOU'RE CHILD AND WHEN YOU NEED SUPPORT AND HELP. WE TRY TO DELIVER THAT MESSAGE. THE SECOND PART IS TO DO IT TOGETHER. THAT IS RATHER THAN US BE SOME EXPERT THAT SAYS, HERE'S A REFERRAL, YOU MUST GO TO THE MENTAL HEALTH CENTER OR YOU MUST DO X, Y OR Z, WE CO-DEVELOP A PLAN AND TRY TO BE COLLABORATIVE WITH THE FAMILY. HERE ARE THE NEEDS YOU ARE TELLING ME YOU HAVE AT THIS TIME. I FEEL FOR YOU, I'VE BEEN THERE, I KNOW THAT, I UNDERSTAND THAT. WHICH OF THESE DO YOU WANT TO WORK ON NOW? YOU CAN'T DO IT ALL AT ONCE. WHAT DO YOU WANT TO DO? OKAY, YOU WANT TO DO THAT, I'LL GET ON THE PHONE, LET'S MAKE AN APPOINTMENT FOR NEXT TUESDAY AFTERNOON FOR YOU TO GO SEE THIS MENTAL HEALTH PRACTITIONER, I HOPE IT GOES WELL BUT I'LL CALL YOU AT 4:00 OR EVEN DRIVE YOU OVER THERE TO GET THERE AND IF IT'S NOT WHAT YOU WANT WE'LL FIGURE OUT ANOTHER SOLUTION SO WE'LL DO IT TOGETHER TO NOT FEEL SO MUCH ALONE. >>ABSOLUTELY. I THINK THAT'S A MESSAGE THAT OFTEN I THINK WE NEED TO DO A BETTER JOB OF COMMUNICATING THAT'S IT'S BETTER TOGETHER THAN TO DO ALONE. SO I'M GOING TO ASK YOU ALL TO COMMENT -- THIS IS THE 60th ANNIVERSARY OF NICHD AND CLEARLY WE HAVE DONE TREMENDOUS THINGS OVER THE 60 YEARS AND I'M GOING TO ASK YOU FROM YOUR OWN PERSPECTIVES AND THE PARTICULAR RESEARCH LENS THROUGH WHICH YOU DO YOUR WORK WHAT DO YOU SEE ARE OPPORTUNITIES FOR THE NEXT FIVE OR 10 YEARS FROM YOUR SCIENTIFIC PERSPECTIVE? WHERE ARE SOME AREAS THAT HAVE BEEN UNDER STUDIED THAT ARE NOW PRIMED TO EXPLORE INQUIRY? DR. JOHN, WE'LL START WITH YOU, WHAT MIGHT BE SOME NEXT STEPS IN AREAS OF RESEARCH THAT YOU'RE WORKING ON? >>I'M SUPER EXCITED ABOUT THE PROMISE OF VACCINATION AND WHERE THAT'S GOING TO GO. IF YOU HAD TOLD ME FIVE YEARS AGO WE'D PUT mRNA MANO PARTICLES IN PREGNANT WOMEN FOR A VIRUS JUST STARTED I WOULD THINK THAT'S CRAZY AND IT'S A REAL OPPORTUNITY FOR INTERVENTION FOR BOTH EPIDEMIC INFECTIOUS DISEASES AND NEW INFECTIOUS DISEASES AND CAN WE MAKE INROADS INTO NEONATAL HSB AND THERE'S A NEED TO PROTECT PEOPLE AND VACCINE AGAINST ROUTINE CHILDHOOD ILLNESSES AND I THINK THERE'LL BE INCREDIBLE MOVEMENT IN THE REALM IN THE NEXT FIVE TO 10 YEARS. I'M HAPPY TO BE PUT OUT OF BUSINESS. >>THIS HAS BEEN AN EXCITING TIME TO SEE THE PROLIFERATION OF SCIENCE. THINGS WE'VE BEEN WORKING ON TO REALLY EXPLODE ON THE SCIENTIFIC SCENE, IF YOU WILL, FOR US TO TAKE ADVANTAGE OF AND LEARN FROM. YES, I'M LOOKING FORWARD TO SEEING HOW THIS ALL UNFOLDS. DR. CHUNG, WHAT SAY YOU? ARE THERE OPPORTUNITIES THE NEXT 5, 10 YEARS FROM THE PERSPECTIVE FROM WHICH YOU WORK? >>I BRIEFLY ALLUDED THIS AT THE END BUT NEWBORN SCREENING STARTED OUT BY PARENTS WHO HAD CHILDREN AFFECTED BIG NEURAL DEVELOPMENTAL DISORDERS AND THEY WORKED TO PREVENT THE NEXT GENERATION FROM HAVING THE PROBLEMS THEIR CHILDREN HAD. AGAIN, WE'RE IN THIS TOGETHER. I ALLUDED TO ABOUT IT BUT WITH GENOMIC MEDICINE THERE'S INCREDIBLE OPPORTUNITIES FOR VERY CONDITIONS VERY TREATABLE AND VERY PREVENTIBLE TO BE ADDED TO SCREENING AND DO IT QUICKLY WITH NEW TECHNOLOGIES AVAILABLE. IT DOESN'T JUST STOP WITH THE CURRENT THINGS WE CAN CURRENTLY TREAT. I ALSO OFTEN SAY I HOPE I CAN PUT MYSELF OUT OF BUSINESS AND RETIRE BUT THERE'S A TREMENDOUS SUITE OF NEW TECHNOLOGIES FOR GENETIC TECHNOLOGIES AT LEAST TO BE ABLE TO DO THINGS THAT WILL BE LIFE-ALTERING, TRULY LIFE-SAVING AND LIFE-ALTERING. IT WILL TAKE STEPS TO GO BUT I THINK WE'LL PROGRESS IN A STEP FUNCTION AS ENABLING TECHNOLOGIES ALLOW US TO GET TO THE RIGHT TIME IN LIFE, THE RIGHT PART OF THE BODY AND IN THE RIGHT WAY THAT'S SAFE, THERE'S THREE KEY ISSUES THAT EACH HAVE TO BE SOLVED BUT AS WE CAN DO THAT, WE WILL NOW BE ABLE TO TREAT HUNDREDS OF DISORDERS AT A TIME WITH THOSE ENABLING TECHNOLOGIES. WE'RE STARTING THE PROCESS IN TERMS OF BEING ABLE TO GET INDIVIDUALS TO A DIAGNOSIS AND THERE'S THINGS WE CAN DO WITH OUR CURRENT CARE UNTIL WE GET TO THE POINT OF A CURE AND WE WANT TO MAKE SURE WE LEAVE NO ONE BEHIND AND EVERY CHILD THE EQUAL CHANCE TO A HEALTHY START TO LIFE. >>THAT'S EXCITING. THAT'S A WORLD I WANT TO LIVE IN. LOOKING FORWARD TO SEEING THOSE IDEAS COME TO FRUITION. DR. DODGE, WHAT SAY YOU? >>THANK YOU. THESE ARE TERRIFIC IDEAS. TWO IDEAS COME TO MY MIND ABOUT WHAT WILL HAPPEN IN THE NEXT FIVE TO 10 YEARS. THE FIRST IS I BELIEVE, I HOPE, WE LEVERAGE IN BOTH ASSESSMENT AND DELIVERY OF INTERVENTIONS. SO THE WORLD IS OPEN FOR WEARABLES, APPS, REMOTE KINDS OF ASSESSMENTS, DIAGNOSES THAT WILL CONNECT FAMILIES TO PROFESSIONAL RESOURCES JUST RIGHT WAY I'M IMAGINING THE MOTHER I INTERACTED WITH IS FRANTICALLY WORRIED BECAUSE HER BABY HAS A RASH AND DOESN'T KNOW WHETHER SHE SHOULD GO TO THE EMERGENCY ROOM OR DO TEXTING VIDEO CONFERENCE WITH A NURSE OR HAVE SOME KIND OF REMOTE WAY OF IMMEDIATELY UNDERSTANDING WHAT'S GOING ON? THIS WILL HELP RURAL MENTAL HEALTH CARE AS MUCH AND THE SECOND IS IN THE DELIVERY OF INTERVENTIONS. WE CAN NUDGE FAMILIES WITH APPS, DAILY TEXTS, WHATEVER KINDS OF INTERVENTIONS. SO MUCH WILL HAPPEN THAT WAY THAT WILL BRING PROFESSIONALS AND FAMILIES TOGETHER. THE SECOND DEVELOPMENT IS WHAT MY COLLEAGUES HAVE BEEN DOING AND YOU'VE BEEN DESCRIBING HERE WHICH IS USING BIG DATA AND MACHINE LEARNING TO DEVELOP WHAT I CALL PRE VISION PRECISION PREVENTION. WE CAN UNDERSTAND WHAT'S GOING ON WITH A FAMILY, IDENTIFY RISK EARLY AND INTERVENE EARLY BEFORE THE PROBLEMS GROW TOO BIG. >>YEAH, THAT'S EXCITING AND THERE ARE SO MANY NEW TECHNOLOGIES ON THE RISE THAT CAN HELP US GET THERE. AND FOLLOWING ALONG THE SAME LINE, ONE OF THE ASPIRATIONAL GOALS OF THE NICHD STRATEGIC PLAN IS TO TRAIN THE NEXT GENERATION OF SCIENTISTS AND RESEARCHERS WHO YOU'LL BE PASSING THE BATON ON TO AND WHO WILL BE TAKING THE WORK THAT YOU'VE DONE AND EXPLORING THESE LINES OF INQUIRY AND COMING UP WITH NEW DISCOVERIES AND NEW IDEAS. WHAT DO WE NEED TO DO FROM YOUR PERSPECTIVES TO TRAIN THE NEXT GEN ARE RATION OF RESEARCHERS IN THE AREAS WHERE YOU CURRENTLY ARE LEADING IN THE SCIENCE? SO DR. DODGE, SINCE WE ENDED WITH YOU WE'LL START WITH YOU AND THEN DR. JOHN AND THEN DR. CHUNG. >>SUCH AN IMPORTANT QUESTION AND A HOPE WE EXPAND OUR PROFESSIONAL RESOURCE POOL BOTH PRACTITIONERS AND SCIENTISTS AND DIVERSIFY IT. WE HAVE TO DIVERSIFY. THE VISION I HAVE IN THE WORLD I WORK IN WHICH IS COMMUNITY OF COMMUNITY PUBLIC HEALTH PREVENTION IS TO CREATE SOMETHING LIKE WE HAVE IN OUR MAJOR ACADEMIC CENTERS FOR MEDICAL CARE. THAT IS THOSE ARE UNDERSTAND-BASED ACADEMIC CENTERS ALSO PROVIDING THE BEST CLINICAL CARE AT THE SAME TIME. HOW CAN WE CREATE COMMUNITY CENTERS IN MENTAL HEALTH, PREVENTION, BEHAVIORAL HEALTH, BEHAVIORAL CARE, FAMILY CARE THAT ARE OUT THERE IN THE COMMUNITY AT THE SAME TIME DELIVERING THE BEST CLINICAL CARE WHILE ALSO BEING THE BEST ACADEMIC CENTERS WHERE WE'RE LEARNING. I DON'T HAVE A LOT OF GOOD EXAMPLES OF THAT BUT I WOULD HOPE WE CAN DO THAT AND THEN THAT BECOMES A PLACE FOR TRAINING. TRAINING PRACTITIONERS AND TRAINING SCIENTISTS. >>ABSOLUTELY. WONDERFUL VISION. DR. JOHN. >>YES, I'VE BEEN WATCHING LIKE MANY HAVE THE CHALLENGES THAT WE'VE BEEN HAVING IN THE PEDIATRIC PHYSICIAN SCIENTISTS WORKFORCE WITH FEWER AND FEWER TRAINEES WANTING TO FOLLOW THE PATH. THERE'S A LOT OF THINGS THAT CAN BE DONE TO SOLVE THE CRISIS I THINK IMPROVE FUNDING AND STABILITY IS OBVIOUSLY GOING TO BE KEY. ONE OF THE THINGS I SEE AS BE A REAL POTENTIAL SUCCESS STORY ARE THE PIPELINE PROGRAMS THAT TRY TO GET VERY JUNIOR TRAINEES INTO LABS OR RESEARCH SETTINGS VERY EARLY ON. I'D SIT ON OUR ADMISSIONS COMMITTEE AND WHAT'S OBVIOUS IS STUDENTS COME IN WITH AN IDEA AND THESE ARE SOME OF THE BEST STUDENTS AND HAVE AN IDEA OF WHAT THEY WANT TO DO AND WHAT THEY'RE INTERESTED IN AND MOST TENDS TO COME FROM THEIR MENTOR IN THEIR UNDERGRADUATE EXPERIENCE. I THINK THESE KIND OF PIPELINE PROGRAMS PARTICULARLY THOSE THAT ARE WORKING TO INCREASE THE AMOUNT OF RACIAL AND ETHNIC DIVERSITY WE HAVE IN OUR WORKFORCE IS CRITICAL BECAUSE WE HAVE A REAL CHALLENGE IN RECRUITING AND RETAINING PHYSICIAN SCIENTIST WHO'S LOOK LIKE THE PATIENTS WE TREAT AND STUDYING THE DISEASES OUR COMMUNITIES HAVE. I THINK THOSE ARE CRITICAL ASPECTS IN ORDER TO IMPROVE THAT WORKFORCE. >>WONDERFUL, THANK YOU. AND DR. CHUNG. WELL, ALL THESE ARE FANTASTIC POINTS SO I DON'T HAVE TOO MUCH TO ADD EXCEPT WHAT I'M NOTICING IS NUMBER ONE, SOMETHING HAS TO DRIVE INDIVIDUAL TO DO THIS AND OFTEN TIMES I'M SEEING A PERSONAL MOTIVATION AND A PASSION INDIVIDUALS HAVE FOR A REASON SOMETIMES IT'S CURIOSITY BUT OFTEN TIMES IT'S MOTIVATED BY A PERSONAL COMMUNITY OR FAMILY CIRCUMSTANCE AND THOSE INDIVIDUALS I FIND TO BE INCREDIBLY RESOURCEFUL, KIND, DEDICATED INDIVIDUALS WHO REALLY HAVE A SENSE THAT'S JUST DIFFERENT THAN ANYONE ELSE SO I HAVE GREAT RESPECT FOR THEM AND THE OTHER ONE WILL SEEM LIKE ORTHOGONAL THINGS TO TEACH BUT DATA IS INCREASINGLY AVAILABLE AND IMPORTANT AND MAKING DATA-DRIVEN DECISIONS AND LEARNING HOW TO THINK ANALYTICALLY IS SO INCREDIBLY IMPORTANT BECAUSE WE'LL NEED TO CONTINUE TO LEARN HOW TO LEARN. THE RULES ARE CHANGING VERY RAPIDLY AND THE TOOLS AND THE ABILITY SO WE NEED TO BE ABLE TO CONSTANTLY ADAPT. YET, ON THE OTHER HAND THERE NEEDS TO BE COMPASSION AND THE HUMANISTIC PORTION OF THINGS WITH EMOTIONAL INTELLIGENCE AND BEING ABLE TO CONNECT WITH INDIVIDUALS AS PROVIDERS AND MEMBERS OF THE COMMUNITY AND BEING ABLE TO WRAP THAT INTO ONE PERSON IS NOT ALWAYS EASY BUT I FIND THOSE ARE THE MOST EFFECTIVE PEOPLE IN COMING UP WITH THE RIGHT QUESTIONS AND WORK TOGETHER TO COME UP WITH THE RIGHT ANSWER. >>WITH THAT, WE'RE AT TIME. I WANT TO THANK YOU ALL FOR AN ENGAGING AND PROVOCATIVE DISCUSSION. THANK YOU FOR JOINING US. >>ONE OF THE MOST LIMITING EXACTS IS GETTING AROUND. THE NATIONAL CENTER FOR MEDICAL REHABILITATION RESEARCH FOCUSES ON MOBILITY BECAUSE PART OF OUR MISSION IS TO ADDRESS PHYSICAL DISABILITY. ONE OF THE EXCITING CHALLENGES WE SUPPORT IS CALLED ZERO G WHICH STANDS FOR ZERO GRAVITY. >>WE CAN LITERALLY GIVE PEOPLE A ZERO G EXPERIENCE. I CAN MAKE A PERSON WEIGHTLESS OR WE CAN REQUIRE THE PATIENT TO SUPPORT THEIR FULL BODY WEIGHT. >>WHAT THE ZERO G SYSTEM DOES IS ALLOW SOMEBODY TO MOVE NORMALLY AND NATURALLY AND TASTE THEIR BALANCE AND TEST THEIR ABILITY TO WALK. >>A PATIENT WHO HAS HAD A STROKE IS THINKING WHAT IS LIFE GOING TO BE LIKE. I'M IN THIS BED, I CAN HARDLY MOVE BUT WHEN YOU ATTACH THEM TO ZERO G AND IT HELPS THEM STAND UP FOR THE FIRST TIME AND TAKE THE FIRST STEP AND SAY IT WAS HARD BUT I FEEL LIKE I'M ON THE ROAD TO RECOVERY. THEY'RE PRACTICING EVERY DAY AT HIGH INTENSITY LEVEL AND BECAUSE WHEN YOU'RE IN ZERO G YOU DON'T HAVE TO WORRY ABOUT FALLING AND THEY CAN PUSH THEIR LIMITS. WHEN THEY GET DISCHARGED AND GET HOME AND SEE A SET OF STAIRS AND SAY I GOT THIS. I PRACTICED SO MANY TIMES. >>THE RESEARCH WE SUPPORT THAT IS BEING DONE BY CONNOR WALSH ALLOWS US TO DO THE FOUNDATIONAL SCIENCE TO HELP US UNDERSTAND HOW THE SUIT IS GOING TO BEHAVE WITH A PERSON WHO HAS A STROKE. >>OUR TEAM AT HARVARD AND BOSTON UNIVERSITY ARE STUDYING THE BIO MECHANICS AND PHYSIOLOGY OF HUMAN WALKING AND UNDERSTAND HOW IT'S EFFICIENT AND HOW TO HELP SOMEONE WALK. >>AND IT'S MORE NATURAL GAIT FOR THE LEG. IT'S EASIER TO PUT ON AND BE USED IN THE COMMUNITY. >>WE'RE EXCITED TO PROVIDE A UNIQUE TOOL THAT CAN ENABLE A NEW PARADIGM IN REHABILITATION THAT EXTENDS FROM THE CLINIC TO THE COMMUNITY. >>YOU HAVE CARS THAT DRIVE THEMSELVES AND IT'S INEXCUSABLE WE CANNOT HAVE A TECHNOLOGY THAT CAN GIVE THESE PATIENT THE OPPORTUNITY TO MAKE JUST A FULL RECOVERY. >>THOSE THE TYPES OF ADAPTATIONS AND NOVEL RESEARCH WE CAN FUND TO HELP PEOPLE'S DAY-TO-DAY MOBILITY. >>WE QUICK OFF THE AFTERNOON WITH OUR NEXT SESSION, ENSURING HEALTHY AND OPTIMAL LIVES, MODERATE DR. THERESA HAYES CREWS THE DIRECTOR OF NICHD'S NATIONAL CENTER FOR MEDICAL REHABILITATION RESEARCH. >>WELCOME BACK FROM THE BREAK, EVERYONE. I'M THERESA CRUZ AND I WILL MODERATE THE SESSION ON IMPROVING THE QUALITY OF LIVES AND FUNCTION OF PEOPLE WITH DISABILITIES. PLEASE SUBMIT YOUR QUESTIONS FOR THIS SESSION'S SPEAKERS TO NICHDPRESS ONE WORD AT MAIL.NIH.GOV. AND WE WILL HAVE A QUESTION AND ANSWER SESSION AT THE END. SO NOW IT'S MY LOW PRESSURE TO HAVE A CONVERSATION WITH JUDY HEUMANN. SHE'S A LIFE LONG ADVOCATE FOR THE RIGHTS OF PEOPLE WITH DISABILITIES OR DISABLES PEOPLE. WE'LL USE BOTH TERMS IN THIS SESSION. SHE WAS INSTRUMENTAL IN IN THE DEVELOPMENT AND IMPLEMENTATION OF LEGISLATION TO PROTECT THE CIVIL RIGHTS OF PEOPLE WITH DISABILITIES SUCH AS THE AMERICANS WITH DISABILITIES ACT AND THE REHABILITATION ACT AND SERVED IN THE CLINTON AND OBAMA ADMINISTRATIONS. JUDY IS AN ACCOMPLISHED AUTHOR AND I WOULD ENCOURAGE YOU TO CHECK OUT HER BOOK, BEING HUMAN WHICH WAS PUBLISHED IN 2020 AND HER CONNECTION TO NICHD IS THROUGH THE NATIONAL CENTER FOR MEDICAL REHABILITATION RESEARCH WHERE SHE SERVED ON OUR INAUGURAL ADVISORY BOARD. AND RATHER THAN HAVING A TRADITIONAL TALK, JUDY AND I ARE GOING HAVE A FIRESIDE CHAT. PLEASE WELCOME JUDY TO THE STAGE WITH ME. >>GREAT TO BE WITH YOU, THERESA, THANK YOU. >>THANK YOU. I'M A LONG-TIME ADMIRER MUCH YOUR ADVOCACY AND LEGISLATION WORK ON ACCESSIBILITY AND THE INCLUSION OF PEOPLE WITH DISABILITIES IN ALL ASPECTS OF SOCIETY. CAN YOU TELL THE AUDIENCE WHO MAY NOT BE FAMILIAR WITH YOUR STORY, A LITTLE BIT ABOUT YOURSELF AND THE IMPETUS FOR YOUR ADVOCACY WORK. >>YEAH, THANK YOU. SO I'LL ALSO GIVE A VISUAL DESCRIPTION OF MYSELF. I'M A 74 IN DECEMBER, DISABLED WOMAN. I WAS BORN IN 1947 AND HAD POLIO IN 1949. I'M IN THE APARTMENT OF MY HUSBAND AND MYSELF AND ALSO OUR OFFICE AND I AM BROWN HAIR, SHOULDER LENGTH, RED GLASS AND HAVE ON A BLUE BLOUSE WITH SOME FISH ON THEM AND PHOTOS OF FAMILY AND FRIENDS AND PLANT IN THE BACKGROUND. SO MY LIFE I THINK WAS VERY TYPICAL OF DISABLED PEOPLE IN THE UNITED STATES BORN IN THE LATE '40s AND '50s, WE HAD NO LAWS AT THAT TIME WITH THE RIGHTS OF DISABLED PEOPLE. NICHD CAME ABOUT WHEN PRESIDENT KENNEDY WAS PRESIDENT, I BELIEVE IN 1962 OR 1963. AT THAT POINT WHEN THE CIVIL RIGHTS ACT WAS PASSED IN '64, DISABILITY WAS NOT A PART OF THAT LAW AND I THINK MUCH OF THE WORK THAT NICHD AND OTHER AGENCIES ARE DOING WOULD NOT HAVE THE BENEFIT THAT IT HAS IF IN FACT LAWS PROHIBITING DISCRIMINATION IN EDUCATION, FOR EXAMPLE, HAD PASSED. SO WHEN MY MOTHER TOOK ME TO SCHOOL IN THE 1950s, I HAD NEUROCOGNITIVE AND PHYSICAL DISABILITY AND PULLED MY WHEELCHAIR UP THE STEPS AND THE PRINCIPAL SAID I WOULDN'T GO TO THE SCHOOL BECAUSE WAS A FIRE HAZARD. THIS WAS NOT AN UNUSUAL SITUATION. I LIVED IN BROOKLYN AND THE BOARD OF EDUCATION AT THAT TIME PROVIDED A TEACHER TWICE A WEEK FOR A TOTAL OF TWO AND A HALF HOURS AI WEEK. SO AND I JOKE THAT FOR GOOD BEHAVIOR THEY THREW IN AN OCCUPATIONAL THERAPIST WHO TAUGHT ME NEEDLE POINT. THERE WAS NOT A PRESUMPTION DISABLED INDIVIDUALS, PARTICULARLY THOSE OF US WITH CERTAIN TYPES OF DISABILITIES THE ABILITY TO WALK UP AND DOWN STORES AND AN INTELLECTUAL DISABILITY, CEREBRAL PALSY, OTHER DISABILITIES WHERE ONE'S INABILITY TO BE ABLE TO AMBULATE WOULD RESULT YOU NOT GOING TO SCHOOL AND IF YOU WERE LUCKY GETTING HOME INSTRUCTION. MY PARENTS BECAME ADVOCATES LIKE MOST PARENTS THEY WEREN'T ADVOCATES BEFORE CERTAINLY IN THE AREA OF DISABILITY BUT THEY LEARNED AND OVER THE YEARS WHAT WE HAVE SEEN IS THE COMING TOGETHER OF MANY DIFFERENT TYPES OF GROUPS IN THE AREA OF MENTAL DISABILITIES, CLEARLY, AND GROUPS LIKE CEREBRAL PALSY AND ARC AND OTHERS STARTING IN THE '40s AND '50s AND AGAIN THE ROLE OF PARENTS BEGIN TO FIGHT FOR THEIR CHILDREN AND AS THEIR KIDS WERE GROWING UP BECAUSE IT WAS A WHOLE OTHER ISSUE WHEN I STARTED GOING TO SCHOOL IN THE FOURTH GRADE I JOKE I WAS THE FIRST TO INTEGRATE THE CLASSES WITH CEREBRAL PALSY AND MY LATE FRIEND WAS THE FIRST TO INTEGRATE INTO A KIDS WITH CEREBRAL PALSY. AT THAT POINT IT WAS 9 BUT KIDS WOULD STAY IN SCHOOL UNTIL THEY WERE 21 IF THEY HAD C.P. AND THEN GO TO WORKSHOP. SO ANY OF YOU DOING WORK IN THIS AREA, WHETHER YOU'RE FOCUSSING ON PARTICULAR THINGS LIKE WALKING LIKE WE JUST SAW, IT'S IMPORTANT TO UNDERSTAND THE HISTORICAL CHANGES THAT HAVE GONE ON DURING THE COURSE OF THE LIFE OF NICHD, 60 YEARS. MANY REALLY IMPORTANT THINGS HAVE HAPPENED. BUT I THINK AND WE'LL GET INTO THIS IN DISCUSSION, IT'S IMPORTANT TO SEE THOUGH WE'VE HAD INDIVIDUALS WITH DISABILITIES EDUCATION ACTION, SECTION 504 AND OTHER LAWS WITH DEVELOPMENT DISABILITY AND SOCIAL SECURITY, ETCETERA, WE STILL DON'T SEE THE LEVEL OF QUALITY AND INCLUSION OF DISABLED INDIVIDUALS. >>AND THERE'S REHABILITATION AND ASSISTIVE TECHNOLOGIES. DON'T THINK EVERYONE APPRECIATED HOW CRUCIAL A.T. CAN BE. CAN YOU TALK A LITTLE BIT HOW YOU USED ASSISTIVE TECHNOLOGIES AND THEIR ROLE IN YOUR LIFE? >>YES, AND TO START BY SAYING MANY PEOPLE DON'T EVEN KNOW WHAT A.T. MEANS. SO WHEN YOU'RE WORKING WITH A FAMILY AND A CHILD OR SOMEONE NEWLY DISABLED FROM A STROKE OR WHATEVER IT MAY BE, THE WORD ASSISTIVE TECHNOLOGY IS REALLY A REHAB WORD OR IN THE FIELD OF DISABILITY BUT I THINK IT'S A GOOD QUESTION BECAUSE ASSISTIVE TECHNOLOGY IS AS IT SOUNDS IS SOMETHING THAT SHOULD ENABLE YOU, CAN INVERT THE WORD UNIVERSAL DESIGN BECAUSE WHEN WE LOOK AT THINGS LIKE A SINK THAT'S TOO HIGH. SO SOMEONE IN A WHEELCHAIR CAN'T WASH THEIR DISHES BUT IF YOU LOWER THE SINK, YOU COULD WASH YOUR DISHES OR IF THE CABINET IS LOWER YOU COULD PUT THINGS AWAY. THAT COULD BE FOR SOMEONE OF SHORT STATURE AND COULD BE ANY NUMBER OF PEOPLE WHO ARE NOT TALL ENOUGH OR TOO TALL TO DO CERTAIN THINGS. FOR ME, ASSISTIVE TECHNOLOGY COVERS MY ENTIRE LIFE. I HAD POLIO AS I MENTIONED, I'M A QUADRIPLEGIC AND DON'T WALK OR STAND AND HAVE LIMITED USE OF MY HANDS AND ARMS AND USE MOTORIZED WHEELCHAIR AND HAVE PERSONAL ASS ASSISTANTS I NEED HELP GETTING UP, DRESSED, SHOWERED, ALL THOSE THINGS. FREQUENTLY WHAT IS NOT HAPPENING IS LOOKING AT A CONTINUUM OF SOMEBODY'S NEEDS. SO FOR ME, THE ASSISTIVE TECHNOLOGY, IE A WHEELCHAIR NOT SUFFICIENT BECAUSE I NEED TO GET IN AND OUT OF BED, OFF THE TOILET, SINKS HAVE TO BE CERTAIN HEIGHTS. I WAS TALKING TO THERESA ABOUT THIS EARLIER BECAUSE I USE PERSONAL ASSISTANTS I HAVE PEOPLE SHORT AND TALL TO HELP ME BUT YOU CAN'T GET OUT OF A BED READILY THAT GOES UP AND DOWN. HAVE BEDS SOLD EVERYWHERE WHERE THEY SIT UP AND DOWN AND FEET ELEVATE AND GO DOWN BUT I HAVE NO IDEA WHY THERE IS NOT A COMMON FEATURE WHERE BEDS CAN GO UP AND DOWN. WALK AROUND PLACES OR ROLL AROUND PLACES AND HONESTLY, WHEN I SEE VERY TALL PEOPLE, I REALLY START WORRYING. I DON'T KNOW THESE PEOPLE. WHAT AM I WORRYING ABOUT? I'M WORRYING WHEN THEY GET OLDER IT'S GOING TO BE MORE DIFFICULT FOR THEM TO GET IN AND OUT OF BET AND MORE DIFFICULT TO GET OFF A CHAIR. AND THINGS THAT HAVE BEEN DONE FOR CHAIRS BUT NOT FOR BED. AND SOME WORK NICHD DOES AND OTHERS LIKE NIDELER, BEING ABLE TO GET SOME SIMPLE THINGS LIKE BEDS SOLD OVER THE MARKET THAT ALLOW THE BED TO GO UP AND DOWN WOULD BE SO HELPFUL FOR SO MANY PEOPLE AND ACTUALLY FROM A UNIVERSAL DESIGN PERSPECTIVE WHAT YOU WOULD LIKE IN THE NEXT 10, 20 YEARS IS JUST LIKE PEOPLE EXPECT TO BE ABLE TO GO INTO A STORE AND BUY A BED WHERE THE BACK ELEVATES, ETCETERA, THEY SHOULD BE ABLE TO EXPECT THE BED WILL GO UP AND DOWN. BUT ASSISTIVE IN OUR COMPUTERS AND SOFTWARE AND MAKING SURE THINGS ARE BEING DESIGNED ACCESSIBLY FROM THE BEGINNING THE MORE WE CAN GET AWAY FROM THINGS SO SPECIALIZED THE BETTER WE ARE. I HAVE UNIQUE NEEDS. IT'S REALLY IMPORTANT ALSO WHEN WE LOOK AT ASSISTIVE TECHNOLOGY THAT WE'RE LOOKING AT THE PEOPLE NOT JUST DESIGNING BUT THE PEOPLE DOING REPAIR. AND PEOPLE ARE ORDERING TECHNOLOGY BECAUSE YOU REALLY NEED TO BE ABLE TO UNDERSTAND THE PERSON YOU'RE WORKING WITH. AND I WANT TO SAY THAT ONE THING ABOUT THE WAY WE GETS TECHNOLOGY THERE'S A PRESUMPTION YOU THE WHAT YOU NEED AND IN SOME CASES WE DON'T. IN PART IF THE TECHNOLOGY IS REALLY OPENING NEW OPPORTUNITIES WE DON'T KNOW WHAT TO ASK FOR OR DON'T KNOW TOTALITY OF WHAT TO DISCUSS. THINGS LIKE MYSELF AND OTHER PEOPLE I KNOW WHO HAD VANS. WE'VE BEEN GETTING WHEELCHAIRS WHERE NO ONE ASKED THERE WE USED ANY TRANSPORTATION. SO NO ONE WAS MEASURING HOW TALL WE WERE FROM THE GROUND TO THE TOP OF OUR HEAD AND I HAD A FRIEND TO HAD TO GET RID OF THE VEHICLE BECAUSE AFTER THEY CHANGED HIS WHEELCHAIR HE COULDN'T GET IN AND OUT OF HIS VEHICLE. WHEN LOOKING AT ASSISTIVE TECHNOLOGY IT'S IMPORTANT WE LOOK AT IT AS SOMETHING WHICH REALLY WILL ENABLE SOME PEOPLE TO EITHER RE-ENTER A WORLD THEY WERE IN BEFORE AND YOU CLEARLY SAW THAT IN THE THINKING ABOUT THE WALKING TECHNOLOGY BEING USED AND TRAINING PEOPLE TO DO THINGS THEY WERE DO BEFORE BUT IN MANY CASES PEOPLE WERE NOT DOING THESE THINGS BEFORE. LIKE MYSELF BORN WITH DISABILITY AND ASSISTIVE TECHNOLOGY IS CRITICAL AND NEED TO LOOK AT IT WAY BEYOND THE TOOL ITSELF AND HOW TO ENSURE THE TOOLS BEING DESIGNED ARE ABLE TO BE AS FLEXIBLE AS POSSIBLE, BENEFIT PEOPLE AND LOOK AT THE TOTALITY OF THE PERSON'S LIFE. >>THANK YOU. THAT'S A GOOD PERSPECTIVE ON WHAT DESIGNERS NEED TO THINK ABOUT WHEN THEY'RE INTERACTING WITH THEIR CLIENTS. >>AND PEOPLE BEING TRAINED. YOU HAVE THE DESIGNERS THAT MAKE THE PRODUCT BUT ALL TOO FREQUENTLY THE PEOPLE THAT ARE DOING THE ORDERING DON'T HAVE TRE SAME TRAINING AND -- THE SAME TRAINING AND IT'S EQUALLY IMPORTANT THE O.T.s, P.T.s, SPEECH THERAPIST AND THE FAMILIES AND INDIVIDUAL USER GET A BETTER UNDERSTANDING FROM THE VERY BEGINNING WHEN LOOKING AT A.T. AND IT SHOULD BE LIKE AN INTRODUCTORY VIDEO WHICH ALLOWS PEOPLE TO START THINKING ABOUT WHAT DO YOU WANT TO DO IN YOUR LIFE AND WHAT WERE YOU DOING IN YOUR LIFE AND HOW CAN THE TECHNOLOGY WE HAVE NOW BUT IT'S ALSO THINKING ABOUT THE TECHNOLOGY FOR THE FUTURE. >>SO YOU HAVE BEEN FEATURED IN A DOCUMENTARY ABOUT THE DISABILITY RIGHTS MOVEMENT ON NETFLIX CALLED KIRK CAMP AND EXECUTIVE PRODUCED BY PRESIDENT OBAMA AND PORTRAYED BY AN A TONY AWARD WINNING ACTOR WHO ALSO USES A WHEELCHAIR FOR MOBILITY AND THAT WAS ON A TELEVISION SHOW ABOUT CIVIL RIGHTS. HOW DO YOU THINK -- >>JUNK HISTORY. >>I WASN'T GOING TO SAY THE NAME. HOW DO YOU THINK THESE NEW MEDIA REPRESENTATIONS WILL IMPACT THE REPRESENTATION OF PEOPLE WITH DISABILITIES? OPPOSED TO THE WAY TRADITIONALLY THEY'VE BEEN SHOWN? >>THE WHOLE ISSUE OF REPRESENTATION IS SO VERY IMPORTANT. AND IT'S SOMETHING THAT WE NEED TO DO MEANINGFUL RESEARCH ON PARTICULARLY ON THE AREA OF DISABILITY. I THINK THERE'S APPROPRIATE PRESUMPTION AND WHICH IS THAT WHEN ONE DOESN'T SEE ONE'S SELF THAT IS GIVING A PROFOUND MESSAGE, THE ABSENCE OF. WHEN WE LOOK AT PEOPLE OF COLOR, BLACK PEOPLE, LATINOS, ASIANS, PEOPLE WITH DIFFERENT GENDER ORIENTATIONS, DIFFERENT RELIGIOUS BACKGROUNDS, IN MY LIFE TIME THERE'S BEEN DRAMATIC CHANGES IN TELEVISION, IN DOCUMENTARIES, ON THE NEWS, IN MOVIES, IN NEWSPAPERS. MUCH MORE CONSCIOUSNESS ABOUT THIS BUT YOU STILL ARE INFREQUENTLY SEEING DISABLED PEOPLE WITH MANY FORMS OF DISABILITIES WHO ARE WHITE OR BLACK OR ASIAN OR LATINO OR GAY OR STRAIGHT OR WHATEVER IT MAY BE. IT'S NOT THAT WE'RE NOT SEEING IT AT ALL AND I CAN TELL YOU WHEN I'M WATCHING TV I PICK UP IMMEDIATELY WHEN I SEE SOMETHING AND ADVERTISEMENTS NOW ARE SEEING A NUMBER OF PLACES LATELY WHERE IF YOU KNOW THAT PERSON IS IN A WHEELCHAIR BECAUSE I USE A WHEELCHAIR AND I KNOW WHAT IT LOOKS LIKE, YOU MAY SEE A COUPLE PEOPLE IN A BANK AD OR SOME OTHER THINGS BUT LIKE QUICKLY. DISABLED PEOPLE ARE NOT GIVEN THE SAME LENGTH OF TIME FREQUENTLY EVEN WHEN WE ARE BEING SHOWN IN THINGS LIKE ADS. I WANT TO REALLY UNDER SCORE THE FACT THAT IT IS OUR RESPONSIBILITY WORKING IN THE FIELD OF REHAB OR DISABILITY IN GENERAL THAT WE BE MUCH MORE DAMNING OF REPRESENTATION OF DISABLED PEOPLE BY DISABLED PEOPLE AND WE RECOGNIZE THE IMPORTANCE OF THE DIVERSITY. AND WHILE I DON'T WORK IN GOVERNMENT ANY MORE I STRONGLY BELIEVE WE NEED TO BE MORE PERSISTENT AND CONSISTENT ON MAKING SURE THAT WHEN WE LOOK AT ISSUES LIKE ASSISTIVE TECHNOLOGY THAT PEOPLE ARE WE USE ASSISTIVE TECHNOLOGY ARE BEING SEEN. AND MORE BROAD REPRESENTATION. COMMUNICATION TECHNOLOGY IS ANOTHER REALLY IMPORTANT AREA THAT'S BEEN EMERGING OVER THE LAST FEW DECADES AND BLIND PEOPLE AND PEOPLE WHO AREN'T ABLE TO TYPICALLY ARTICULATE AND I THINK ONE OF THE REASONS WHY IT'S SO VERY IMPORTANT THAT WE ARE NOT ONLY SEEING OURSELVES BUT IT'S AS IMPORTANT AS THE NON DISABLED COMMUNITY OR PEOPLE WITH INVISIBLE DISABILITIES AS WE ALL KNOW THE MAJORITY OF PEOPLE WHO HAVE INVISIBLE DISABILITIES. YOU CAN'T SHOW SOMEONE LIKE WHO HAS DEPRESSION OR CANCER BUT YOU DO NEED TO BE ABLE TO MAKE SURE IN THE DIALOGUES AND REPRESENTATION WE'RE TALKING WITH THIS. THE REASON WHY I THINK IT'S IMPORTANT IS WE NEED TO BE NORMALIZING ALL THESE THINGS. WE NEED TO NORMALIZE SOME TECHNOLOGIES AND THE MAN RUNNING FOR A SENATE SEAT WHO HAD A STROKE AND IS USING CAPTIONING AND THE FACT THAT THEY'RE DISCUSSING WHETHER OR NOT HE'S CAPABLE OF BEING A SENATOR BECAUSE HE'S CAPTIONING, THAT'S IN MY VIEW IS THE RESULT OF THE FACT THAT WE DON'T DISCUSS THE ISSUE OF WHAT IS CAPTIONING AND WHAT IT HAS BENEFIT AND NOW WE HAVE CAPTION IN MANY PLACES. PEOPLE FREQUENTLY DON'T TURN IT ON BUT I THINK IF PEOPLE UNDERSTOOD THE VALUE OF CAPTIONING, I TURN CAPTIONING ON SO OFTEN BECAUSE I MAY NOT UNDERSTAND SOMEBODY. THE MICROPHONE -- THEY MAY HAVE AN ACCENT WHATEVER IT MAY BE BUT IF CAPTIONING WAS NORMALIZED ONE WOULD NOT QUESTION ONE'S NEED TO USE CAPTIONING. >>THANK YOU, I'M A BIG FAN OF CAPTIONING FOR MY BBC WATCHING, I NEED IT. >>GREAT EXAMPLE. >>I THINK WE'RE OUT OF TIME. BUT I WANT THE TO JUST SAY THANK YOU SO MUCH. IT'S HANDS DOWN THE HIGHLIGHT OF MY WEEK. THANK YOU SO MUCH TAKING THE TIME TO TALK WITH ME TODAY AND WE'LL SEE YOU AT THE END FOR Q&A. THANK YOU. >>THANK YOU FOR INVITING ME. IT'S GREAT. >>OUR NEXT SPEAKER IS CLAIRE LE PICHON. SHE IS AN INVESTIGATOR IN THE DIVISION OF INTRAMURAL RESEARCH AND BEGAN IN 2016 AND SHE STUDIES THE CELLULAR MECHANISMS UNDERLYING THE ONSET AND PROGRESSION OF NEURODEGENERATIVE DISEASE. EXCUSE MY, I SHOULD HAVE SAID INTRAMURAL AT NICHD. ONE OF OUR OWN. SHE WORKED AT A CUP MAY HAVE HEARD OF, GENNENTECH AND WORKED ON THE PRECLINICAL DRUG DEVELOPMENT FOR MULTIPLE NEURODEGENERATIVE DISEASE PIPELINES USING A MOUSE MODEL OF THE DISEASE. SHE EARNED HER B.A. DEGREE FROM CAMBRIDGE UNIVERSITY, U.K. AND EARNED HER Ph.D. IN BIOLOGICAL SCIENCES FROM COLUMBIA UNIVERSITY. WITHOUT FURTHER DELAY, I WILL TURN THE FLOOR OVER TO CLAIRE. THANK YOU. >>THANK YOU, TERESA. I'D LIKE TO SHARE THE WORK WE DO IN MY LAB AND HIGHLIGHT AND HOPEFULLY I'LL CONVINCE YOU IS THAT THE TYPE OF BASIC RESEARCH THAT WE DO IS REALLY IMPORTANT. SO WE'RE VERY INTERESTED IN HOW NEURONS RESPOND TO INJURY AND I THINK THIS WORK CAN HELP US BETTER UNDERSTAND THE PHYSIOLOGY OF NEURODEGENERATION DISEASE WHETHER IT'S DISEASE OR ENVIRONMENTALLY CAUSED. WE MODEL NEURODEGENERATION USING MICE AND DO VARIOUS FORMS AND STUDY TRAUMATIC INJURY TO THE BRAIN AND THE SPINAL CORD AND WE'RE INTERESTED IN UNDERSTANDING WHAT HAPPENS AT THE CELLULAR LEVEL. AND RECENTLY, I'LL SHARE THIS TOWARDS THE END OF MY TALK, WE HAVE STARTED STUDYING HUMAN NEURONS IN A DISH USING IPSC TECHNOLOGY. I'LL BRIEFLY INTRODUCE ONE OF THE SIGNALLING PATHWAYS WE WORK ON. AND SHARE VIGNETTES OF WORK WE'VE DONE AT NICHD. IN SIMPLE TERMS, NEURODEGENERATION CAN BE CAUSED BY ENVIRONMENTAL FACTORS IN THE DEVELOPMENT AND LIFE SPAN. IN MY LAB WE STUDY DOWN STREAM PATHWAYS THAT ARE COMMON TO MANY DIFFERENT SCENARIOS IN WHICH ONE CAN OBSERVE NEURODEGENERATION AND WE'RE INTERESTED IN MODELLING THIS IN MICE AND ALSO UNDERSTANDING WHETHER WHAT WE LEARNED FROM THE MICE TRUE IN HUMAN NEURONS. WE'RE INTERESTED IN TYPES AND INTERESTED IN THE DOWN STREAM MECHANISMS AND I'LL TELL YOU ABOUT ONE OF THESE TODAY. AND THIS IS WORK THAT I STARTED THINKING ABOUT AT GENENTECH BECAUSE WE WERE TRYING TO DEVELOP DRUGS TO TREAT NEURODEGENERATION AND ONE WAY IS TO TARGET A DOWN STREAM PATHWAY WHERE YOU DON'T HAVE TO UNDERSTAND ALL THE DIFFERENT CAUSES THAT LED TO THE NEURODEGENERATION AND THE EXAMPLE IS USING KINASE. SO DUAL LEUCINE ZIPPER KINASE IS ESSENTIAL FOR PROPER DEVELOPMENT WITHIN AN ORGANISM. I'M SHOWING AN EXAMPLE WHERE THE APPROPRIATE NUMBER OF NEURONS IN A MATURE ORGANISM IS DETERMINED ACT ACTUALLY BY AN OVERPRODUCTION OF NEURONS AND A WAVE OF CELL DEATH OF THE EXTRA NEURONS THAT DIDN'T MAKE APPROPRIATE CONNECTIONS AND THIS IS ESSENTIAL FOR THAT NORMAL HEALTHY DEVELOPMENTAL PROCESS. WE WONDERED WHETHER IT CAN BE ACTIVATED AGAIN IN THE CONTEXT OF DISEASE. THIS IS WORK I DID AT GENENTECH WHERE WE LOOKED AT A MOUSE MODEL OF DEGENERATION. IT TURNS OUT THERE ARE LINKS BETWEEN PATHWAYS THAT CONTROL PROPER NEURONAL DEVELOPMENT AND ALSO DEGENERATION LATER IN LIFE. AND ONE OF THE BEST WAYS TO STUDY THIS IN A CONTROLS WAY IS TO INJURY THE AXON. SO WITH NERVE INJURY THAT'S A GOOD WAY OF ACTIVATING THIS PATHWAY AND I'M GOING TO SUMMARIZE A LOT OF WORK THAT HAS BEEN DONE OVER THE PAST COUPLE DECADE IN MANY MODEL ORGANISMS AND ESSENTIALLY THE DUAL LEUCINE KINASE DRIVES THE PATHWAY WHERE YOU GET PHOSPHORYLATION OF DROWN STREAM PATHWAYS AND SENDS A SIGNAL TO THE CELL BODY. SOMETIMES THE AXON INJURY IS FAR FROM THE CELL BODY. THIS IS A KIND OF RETRO GRADE SIGNALLING. GET THE AXON INJURY AND THE RETRO GRADE SIGNALLING TELLS THE NEURON THAT THIS INJURY HAS HAPPENED SOMETIMES VERY FAR AWAY AND THE CELL IS ABLE TO TURN ON DIFFERENT GENES THAT ALLOW IT TO RESPOND TO THE INJURY. AND THIS ACTUALLY ALLOWS THE NEURON TO DO MANY THINGS IN RESPONSE TO THIS INJURY. SO THE AXON CAN DEGENERATE AND LOTS OF OTHER PLAYERS ARE INVOLVED IN THAT PROCESS AND THE AXON CAN SOMETIMES REGENERATE. THAT'S REALLY IMPORTANT IN TERMS OF BEING ABLE TO REPAIR AND PROTECT THE NERVOUS SYSTEM BUT THIS PATHWAY CAN ALSO DRIVE NEURONAL DEATH AS WELL AS SURVIVAL AND THE EXACT OUTCOME DEPENDS ON THE CONTEXT AND THAT CAN BE DIFFERENT NEURON TYPES, A DIFFERENT ORGANISM, WHERE THE NEURON IS WHETHER IT'S IN THE BRAIN OR IN THE PERIPHERAL NERVOUS SYSTEM. ONE OF THE THINGS MY LAB DISCOVERED IS THAT THIS PATHWAY CAN ALSO SIGNAL TO THE OUTSIDE OF THE CELL. ALL THE THINGS I DESCRIBED THE REPAIR AND DEGENERATION ARE INTRINSIC TO THE CELL THAT WAS INJURED. WE DISCOVERED THE PATHWAY CAN ALSO LEAD TO NEURAL INFLAMMATION BY TALKING TO THE CELLS ON THE OUTSIDE AND THIS IS WORK DONE BY THIS GREAT TEAM IN MY LAB. A GREAT NEUROANATOMY LESSON. THIS IS A DIAGRAM OF THE SPINAL COLUMN AND YOU CAN SEE THERE ARE THESE DRGs OR DORSAL ROOT GANGLIA THAT LINE THE SPINAL CORD AND THOSE ARE DRGs SENSORY NEURONS EXTEND ONE INTO THE DORSAL END AND THE OTHER END CONNECTS TO THE PERIPHERY LIKE THE SKIN. IN ORANGE YOU CAN SEE THE MOTOR NEURONS. THOSE RESIDE IN THE SEN VENTRAL OF THE SPINAL CORD AND ALLOW MOVEMENT AND PROJECT OUT OF THE SPINAL CORD AND IN THE MOUSE WE DO THIS INJURY PARADIGM IN WHICH WE'LL INJURY THE NERVE BOTH SENSORY AND MOTOR AXONS AND WHAT YOU'RE SEEING HERE IS A VIEW OF THE MOUSE SPINAL CORD THAT WE HAVE STAINED AND CLEARED AND VISUALIZING HERE MICROGLIA THE INFLAMMATORY CELL THAT LIVE IN THE SPINAL CORD IN THE BRAIN AND THERE ARE TWO CLOUD OF THEM. ONE OF THEM IS IN THE PLACE THAT RECEIVES INPUT FROM THE SENSORY NEURONS AND ONE IS SURROUNDING WHERE THE MOTOR NEURONS LIVE. WE LOOKED AT -- WHAT I FORGOT TO MENTION, SORRY, ON THE SIDE OF THE SPINAL CORD WHERE YOU SEE THE TWO CLOUD OF MICROGLIA IS WHERE WE PERFORMED THE INJURY. THE OTHER SIDE WAS UNINJURED. GET THIS NEURAL INFLAMMATION AND WHEN WE LOOKED IN A KNOCKOUT ANIMAL THIS WAS PREVENTED AND IN THE SENSORY AND MOTOR NEURONS AFTER WE CUT THEM, THAT ACTIVATED THE DLK PATHWAY IN THE AXONS AND IT SWITCHES ON A GENE CALLED CSF1 AND THAT GENE GETS EXPRESSED IN BOTH THE NEURON TYPES AND IT IS A SIGNAL TO THE MICROGLIA IN THE SURROUNDING TISSUE TO PROLIFERATE. AND THAT'S WHAT YOU WERE SEEING WITH THE WHITE CLOUD. IN THE SPINAL CORD. I'M GOING SWITCH GEARS NOW. THIS WAS REALLY INTERESTING BECAUSE THIS WAS AN EXAMPLE OF A GENE THAT GETS TURNED ON IN RESPONSE TO THE INJURY AND WE WERE REALLY INTERESTED OR ARE INTERESTED IN KNOWING WHAT WOULD THE WHOLE ENSEMBLE OF THE GENES WITH INJURY LOOK LIKE AND ONE WAY IS TO YOU SINGLE CELL SEQUENCING AND WERE INTERESTED IN DOING THIS IN SPINAL MOTOR NEURONS. THIS IS TWO GRADUATE STUDENTS WHO DID THE WORK AND PUBLISHED LAST YEAR AND SHOW A COUPLE HIGHLIGHTS FROM THE STUDY. WHAT WE IN THE WORK WAS NOT STUDY IN THE CONTEXT OF INJURY BUT GENERATE AN ATLAS OF THE DIFFERENT KINDS OF SPINAL MOTOR NEURONS THAT EXIST IN A HEALTHY MOUSE AND USE IT FOR THE BASELINE ATLAS FOR WHAT HAPPENS IN AN INJURY OR DISEASE CONTEXT. WHAT WE DID WAS ABLE TO LABEL THE SPINAL MOTOR NEURONS YOU SAW IN GREEN AND ISOLATE THEM FROM THE SPINAL CORD OF MICE AND THEN INDIVIDUALLY SEQUENCE THE WHOLE ENSEMBLE OF GENES EXPRESSED IN EACH INDIVIDUAL NEURON. AND WHAT YOU END UP WITH IS AN ATLAS THAT LOOKS LIKE THIS WHERE EACH DOT REPRESENTS ONE CELL AND WE HAVE AND THE LOCATION OF THE DOT REFLECTS HOW SIMILAR AND PROXIMITY TO ANOTHER DOT REFLECTS HOW SIMILAR THE TRANSCRIPTOME MEANING ALL THE GENES EXPRESSED FROM THAT CELL ARE TO EACH OTHER. TWO GREEN CELLS WILL RESEMBLE EACH OTHER VERY CLOSELY OPPOSED TO TWO CELLS OF ANOTHER COLOR IN THIS CASE. WE HAVE SKELETAL MOTOR NEURONS THAT CONNECT TO MUSCLE AND OTHERS THAT CONNECT TO GLANDS AND CONTROL ORGANS AND INTERNEURON CONTROL HOW NEURONS TALK TO EACH OTHER IN THE SPINAL CORD. I'M JUST GOING TO FOCUS ON THIS SUB TYPE OF ALPHA MOTOR NEURON THAT CONNECT TO SKELETAL MUSCLE AND CONTROL MOVEMENT. IF WE TAKE A CLOSER LOOK AND DO SUBCLUSTERING LOOKING WHETHER THERE ARE SUB TYPES BETWEEN THEM, WHAT WE NOTICE WAS SOMETHING VERY INTERESTING. WE WERE ABLE TO -- WE WERE ABLE TO LOOK AT THIS BY LEVEL. WHETHER THE CELL CAME FROM A PART OF THE SPINAL CORD THAT'S INNERVATING THE FOUR LIMBS OR HIND LIMBS OR BODY WALL AND YOU CAN SEE FOR EXAMPLE IN THIS RED BOX THERE'S A GROUP OF NEURONS THAT ARE ONLY PRESENT IN LIMB INNERVATING LEVELS BUT ABSENT FROM THE THORACIC REGION. WE HYPOTHESIZED THESE WERE SPECIALIZED TO DO WITH INNERVATING A LIMB AND THEN ONE OF THE PIECES OF INFORMATION WE GET FROM THE SEQUENCING IS THE BEST GENE FOR THAT POPULATION. IT WAS A GENE CALLED CTNE4. AND SO WHAT WE DID WAS TO INJECT A TRACER INTO MUSCLES OF THE LIMB AND LOOK AT THE SPINAL CORD AT LABELLED CELLS AND USING THE SEQUENCING, FOR EXAMPLE, THIS GENE CPNE4 WE CAN THEN SEE WHETHER THE BLUE SELL THAT WAS LABELLED WE INJECTION IN THE MUSCLE REGION CORRESPONDED TO THE POPULATION WE DEFINED IN THE SINGLE CELL DATA SET AND WE FOUND THAT SO THERE ARE TWO EXAMPLES OF TWO BLUE CELLS THAT ARE ALPHA MOTOR NEURONS AS SHOWN BY THE RED MACKER AND EXPRESSED THE CPNE4 REGION AND WE FOUND THAT THESE ARE THE EQUIVALENT OF A DIGIT INNERVATING MOTOR NEURON. WE ADVANCED OUR BASIC BASELINE KNOWLEDGE OF WHAT MOTOR NEURONS EXIST AND DID AN ANALOGOUS THING AND DISCOVERED MARKERS FOR THE SUB TYPE THAT CONTROL BREATHING. I JUST WANT TO SHOW YOU THESE DATA SETS ARE ACCESSIBLE. THEY'VE BEEN DEPOSITED IN THESE TWO PLACES AND WE'RE CURRENTLY MAKING NEW GENETIC TOOLS, FOR EXAMPLE, WE CAN MAKE MICE LABELLED IN SPECIFIC SUB POPULATIONS OF NEURONS AND CAN STUDY WHAT HAPPENS TO THEM WHEN THEY GET INJURED OR WHETHER WE CAN PROMOTE REGENERATION AND REPAIR, FOR EXAMPLE. NOW I'LL SWITCH GEARS FOR THE LAST VIGNETTE WHICH IS I SHOWED YOU THIS -- I INTRODUCED THE WHOLE PATHWAY AROUND DLK AND THIS IS ALL WELL AND GOOD BUT MOST OF WHAT WE KNOW HAS BEEN GENERATED FROM FINDINGS IN IN THE MOUSE. AND WHAT WE'D REALLY LIKE KNOW IS HOW VALID IS THIS IN THE HUMAN CONTEXT? AND VERY LITTLE WAS KNOWN ABOUT THE BIOLOGY OF DLK IN HUMAN NEURONS. SO WHAT WE'VE STARTED TO DO IS STUDY THIS IN HUMAN NEURONS AND THE WAY WE DO THIS IS BY USING IPSC DERIVED NEURONS. IT'S ESSENTIALLY TAKING FOR EXAMPLE SKIN CELLS FROM A PERSON AND REPROGRAMMING THEM IN THE DISH SO WE CAN PRODUCE NEURONS AND WE HAVE A COLLABORATOR IN NINDS WHO HAS SPEARHEADED DEVELOPING THIS TECHNOLOGY AND STARTED USING IT TO ASK QUESTIONS ABOUT DLK, FOR EXAMPLE. THIS IS JUST A METHOD TO GENERATE THE NEURONS. SO THIS IS WORK DONE BY THIS TEAM IN MY LAB AND WHAT WE'VE DOING ESSENTIALLY IS DOING ANALOGOUS EXPERIMENTS TO WHAT WE'VE BEEN DOING IN THE MOUSE IN TERMS OF CAUSING AN AXON INJURY AND WE'RE LOOKING AT THE NEURONS UNDER A MICROSCOPE AND USING A LASER BEAM TO INJURY INDIVIDUAL AXONS AND THEN WE CAN IMAGE THESE AXONS AND THE CELL BODIES OF THE NEURON UNDER THE MICROSCOPE AND SEE WHAT HAPPENS. SO IN THIS VIDEO, I HOPE YOU CAN SEE WE START WITH A RED AXON JUST LIKE IN THE DIAGRAM AND THEN AS THE MOVIE GOES ON THERE IS A PROGRESSIVE LOSS OF THE RED FLUORESCENCE AND MAY BE DIFFICULT TO SEE BUT THE AXONS ARE UNDERGOING A RETRO GRADE WAVE OF DEGENERATION TOWARDS THE CELL BODY AFTER THE LASER. WE'RE PRETTY EXCITED ABOUT THIS BECAUSE IT MEANS WE CAN STUDY THIS PHENOMENON IN THE DISH. IF WE IMAGE THE CELL BODY AND HERE IN THE VIDEO YOU'LL SEE WHAT HAPPENS IN THE CELL BODY OF AN AXON OF A NEURON THAT'S UNDER GONE THE AXON INJURY. THAT'S THIS ONE HERE. THIS NEURON HERE ON THE TOP IS NOT INJURED. AND I'M STARTING THE VIDEO NOW. WE CAN SEE THE CELL THAT WAS INJURED EVENTUALLY DIES. THE AXON DEGENERATING AND THE CELL BODY DIES. WE'RE EXCITE ABOUT THIS MODEL BECAUSE WHEN DO YOU THIS SAY CULTURED MOUSE MODELS THAT'S NOT WHAT HAPPENS. THE AXONS ACTUALLY THEY MIGHT UNDER GO A LITTLE BIT OF DEGENERATION BUT THE CELLS SURVIVE. YOU CAN SEE BIG DIFFERENCES BETWEEN THIS TYPE OF NEURON AND MOUSE NEURON IN A DISH. I DON'T HAVE TIME TO GO INTO THE DETAILS BUT THE POSTDOC IN MY LAB DISCOVERED A NEW PATHWAY DOWN STREAM OF DLK MEDIATING THIS AXON DEGENERATION AND CELL DEATH OF THE NEURONS VERY YA DLK AND THIS SAY NEW -- VIA DLK AND THIS IS A NEW PATHWAY AND TO CONCLUDE TODAY I'VE SHOWN YOU THATS THERE'S A LINK BETWEEN THE AXON INJURY RESPONSE AND NEUROINFLAMMATION AND THE SIGNALLING CAN BE WIDE RANGING AND CAN IMPACT THE NEURON ITSELF AND SURROUNDING CELLS. I'VE SHOWN YOU WE CAN USE SINGLE CELL TRANSCRIPTOMICS TO IDENTIFY CELL TYPES AND WE'RE EXCITED TO INVESTIGATE HOW THE TYPES MAY DIFFERENTIATE VULNERABILITY TO DISEASE AND LASTLY I'VE SHOWN YOU WITH -- WE CAN ELUCIDATE RELEVANT PATHWAYS USING A NEW MODEL OF AXON DEGENERATION LEADING TO NEURON DEATH IN HUMAN NEURONS. I HOPE I'VE CONVINCED YOU THAT THIS TYPE OF FUNDAMENTAL KNOWLEDGE IS ESSENTIAL NEURODEVELOPMENT DISORDER AND DEVELOP CLINICAL THERAPIES AND NEURAL REPAIR AND HOPE I'VE HIGHLIGHTED HOW COMPLEMENTING WORK IN MODEL ORGANISMS WITH STUDIES IN HUMAN NEURONS CAN ACCELERATE TRANSLATION OF BASIC RESEARCH TO CLINICALLY USEFUL KNOWLEDGE. SO WITH THAT I'D LIKE TO THANK THE MEMBERS OF MY LAB AND OUR COLLABORATORS AND FOR THE OPPORTUNITY TO SPEAK TO YOU TODAY. THANK YOU VERY MUCH. >>THANK YOU, CLAIRE, THAT WAS FABULOUS. OUR THIRD SPEAKER IS THIRD SPEAKER IS JOHN CONSTANTINO FROM CHILDREN'S HEALTH CARE ATLANTA AND EMORY UNIVERSITY AND CHILD PSYCHIATRIST AND PEDIATRICIAN WHO WORKS ON UNDERSTANDING GENETIC AND ENVIRONMENTAL AFFECTS ON SOCIAL DISORDER OF CHILDHOOD PARTICULARLY AUTISM. EVEN IF YOU DON'T KNOW JOHN YOU MAY BE FAMILIAR WITH HIS SIGNATURE QUANTITATIVE RATING SCALE, THE SOCIAL RESPONSIVENESS SCALE THAT'S BEEN TRANSLATED TO MORE THAN 60 FOREIGN LANGUAGES AND USED IN OVER 2 MILLION TEST ADMINISTRATIONS PER YEAR IN RESEARCH AND CLINICAL SETTINGS. IN ADDITION TO HIS WORK IN THE AUTISM SPECTRUM, HE AND HIS TEAM WORK TO UNDERSTAND AND OFFSET THE INFLUENCE OF MALTREATMENT ON SOCIAL TREATMENT IN CHILDHOOD. HE IS CURRENTLY LEADING EFFORTS TO ADDRESS THE GROWING EPIDEMIC OF BEHAVIORAL AND MENTAL HEALTH ISSUES IN CHILDREN AND ADOLESCENTS IN GEORGIA. JOIN ME IN WELCOMING, JOHN. THANK YOU. >>THANK YOU SO MUCH FOR THE INTRODUCTION AND IT'S GREAT TO BE WITH EVERYONE. I WANT TO OFFER MY CONGRATULATIONS TO NICHD ON THIS VERY IMPORTANT 60th. I'M DLAT ED DELIGHTED TO BE PAT OF THE SYMPOSIUM AND THANK DR. BIANCHI AND I WANT TO POINT OUT THAT DIANA ASKED ME TO TALK ABOUT SCREENING DISABILITIES IN CHILDREN AND FOR CHILDREN WITH AUTISM AND SO THAT WILL BE THE TOPIC MIFF TALK AND I'M ALSO VERY HAPPY TO BE REPRESENTING IN A CERTAIN WAY THE INDIVIDUALS WHO HAVE LED SOME OF THE INTELLECTUAL DEVELOPMENTAL DISABILITIES RESEARCH CENTERS NICHD HAS FUNDED OVER THE YEARS. I WAS PROUD TO BE A MEMBER OF THE NETWORK AND THE WORK I'LL SHOW TODAY REPRESENTS WORK DONE AT WASHINGTON UNIVERSITY IN THAT CENTER WHICH IS FLOURISHING TODAY. SO FIRST, SOME DISCLOSURES, NO STOCK EQUITIES TO REPORT BUT CONSULTING RELATIONSHIP WITH SCREENING TECHNOLOGIES. DO I RECEIVE ROYALTIES FOR THE SPECIAL DISTRIBUTION OF THE INSTRUMENT THAT WAS MEASURED SOCIAL RESPONSIVENESS SCALE AND I ALSO WANT TO POINT OUT MY RESEARCH SUPPORT FROM NICHD OVER THE YEARS OF COURSE THE CENTERS FOR DISEASE CONTROL AND NATIONAL INSTITUTE OF MENTAL HEALTH. I WAS 6 WEEKS OLD WHEN NICHD WAS FOUND AND GREW UP IN THE ALBERT EINSTEIN COLLEGE OF MEDICINE AND MY LAB WAS FUNDED BY NICHD OVER THE YEARS AND AS I SAID I'VE BEEN A MEMBER OF THE IEDRC NETWORK UNTIL MY VERY RECENT MOVE THAT WAS ALLUDED TO. THIS PIVOT IN MY OWN CAREER FOLLOWS SOMETHING THAT ISSUES DIRECTLY FROM THE KENNEDY FOUNDATIONS OF NICHD AND THIS IS FROM AN ARTICLE THAT WAS IN THE NEW YORK TIMES A COUPLE WEEKS AGO. I'M A PSYCHIATRIST BY TRAINING AND THIS ARTICLE TALKED ABOUT THE SOLUTION TO AMERICA'S MENTAL HEALTH CRISIS WHICH VERY MUCH RELATES TO ALL ASPECTS OF HUMAN BRAIN AND MIND DEVELOPMENT THAT'S BEEN ADDRESSED IN THIS CONFERENCE AND IS PIVOTAL TO NICHD'S MISSION. WHAT THIS ARTICLE POINTED OUT WAS PRESIDENT KENNEDY ENVISIONED A METHOD FOR THE EVIDENCE-BASED OF THE FIELD THAT TIM SHRIVER POINTED OUT NOT ONLY THINGS WE STILL DON'T KNOW BUT THINGS WE'RE DELIVERING THAT WE DO KNOW. THIS PIVOT IN MY CAREER IS BASED ON SOME OF AN UNFULFILLED PROMISE OF PRESIDENT KENNEDY TO GET BACK TO THE DELIVERY AND BALANCE OF SCIENCE AND SERVICE. I MADE THIS RECENT MOVE TO CHILDREN'S HEALTH CARE ATLANTA IN EMORY BASED ON A FORTUNATE OPPORTUNITY TO REALLY IMPLEMENT THE EVIDENCE BASE FOR SUPPORT OF CHILD MIND, BRAIN AND DEVELOPMENT WITH A HEALTH CARE MAKING A TRULY HISTORIC COMMITMENT AND INVESTMENT IN CHILDREN'S MENTAL HEALTH AND I FEEL FORTUNATE TO MOVE IN THAT DIRECTION IN MY CAREER AND LOSS TO POINT OUT THAT I WILL ABSOLUTELY BE FOLLOWING THE LEADS WE'VE DEVELOPED I'LL TELL YOU ABOUT TODAY. THE LEADS ARE IN VERY GOOD HANDS AND I THINK THAT EVIDENCE BASE IS GOING TO CONTINUE TO FLOURISH. WELL, OUR WORK STARTED WITH THE VERY DIFFICULT PROBLEM THAT WE WERE NOT CERTAIN ABOUT THE STRUCTURE OF AUTISM SYMPTOMS AS THEY MANIFEST THEMSELVES IN NATURE. AND WHEN WE TOOK A QUANTITATIVE APPROACH TO THE MEASUREMENT OF AUTISM AS A CLUSTER OF SYMPTOMS AND TRAITS, ONE OF THE EARLIEST THINGS WE FOUND IN THE SOCIAL RESPONSIVENESS SCALE AND IMPLEMENTING THAT IN THE POPULATION IS THAT THOSE TRAITS AND SYMPTOMS THAT CHARACTERIZE AUTISM ARE FULLY DISTRIBUTED IN NATURE. YOU CAN SEE THE QUOTE, UNQUOTE, BELL CURVE ON THE LEFT AND ONE OF THE INTERESTING THINGS WE LEARNED EARLY ON IN OUR WORK AND THE INHERITED FACTORS THAT DETERMINE INDIVIDUAL VARIATION IN THE TRAITS ARE INFLUENTIAL AS FOR AUTISM AND THE HERITABILITY ARE THE SAME ORDER ON THE HERITABILITY OF AUTISM ITSELF. AND THESE TRAITS ARE EXTREMELY STABLE OVER TIME IN THE UPPER RIGHT HAND QUADRANT IS A SCATTER PLOT OF THE REPEATED MEASUREMENTS OVER THE YEARS OF LIVES OF INDIVIDUALS FOLLOWED OVER THE COURSE OF CHILDHOOD AND SHOWING HOW STABLE THE TRAITS ARE ACROSS THE WIDE DISTRIBUTION AND THE X AXIS BEING TIME 1 AND Y AXIS BEING TIME 2. THESE TRAITS ALSO ARE FAITHFULLY TRANSMITTED IN FAMILIES. THIS IS A STUDY EMBEDDED WITH THE STUDY SHOWING THE NORMATIVE VASION IN TRAITS ARE SOCIALED WITH THE TRAITS OF CHILDREN AND WHEN PARENTS HAVE BOTH HAVE SOMEWHAT OF AN ACCESS TO THE TRAITS RELATIVE TO THE POPULATION WHEN THEY'RE THEY'RE WITHIN THE NORMAL RANGE OF DEVELOPMENT THIS STARTS TO INCREASE THE LIABILITY FOR AUTISM AMONGST THEIR CHILDREN AND THE LIKELIHOOD OF THOSE MATINGS OCCURRING DOES NOT HAPPEN BY CHANCE BECAUSE THESE TRAITS ARE ALSO VERY POWERFUL INFLUENCERS ON MATE SELECTION AND PEOPLE WITH HIGHER OR LOWER LEVELS OF THE CHARACTERIZING VARIANTS OF THE FEATURES OF SOCIAL VARIATION WILL FIND EACH OTHER AND THESE ARE IMPORTANT ASPECTS ON MATE SELECTION AND INTERGENERATIONAL TRANSMISSION OF AUTISM IN THE POPULATION. AND THIS WAS TO THINK ABOUT THE SPACE BETWEEN AUTISM WHEN IT'S INHERITED AND AUTISM WHEN IT ARISES AS A FUNCTION OF A DE NOVO CHANGE IN THE GERM LINE THAT RESULTS IN A NEW OR SPORADIC CASE OF AUTISM. AS SHE APPROPRIATELY POINTED OUT IN CASES OF AUTISM, WHEN AUTISM IS TRANSMITTED IN FAMILIES, WE KNOW VERY LITTLE ABOUT THE BACKGROUND OF GENETIC VARIATION RELATES TO THE ACTUAL SYSTEM STRUCTURE AND MORE ABOUT THE DEMOVE -- DE NOVO CASES FROM THE DELETERIOUS CASES. AND THEY'RE NOT ALWAYS THE SAME AS WHAT IS MOST COMMONLY OCCURS IN THE POPULATION AND THOSE WITH SINGLE GENES ARE ASSOCIATED WITH DEVELOPMENT AND THERE'S MORE COMMON CASES OF AUTISM AND THERE'S THE DISTINCT LACK OF AN EFFECT OF SEX ON THE PREVALENCE FOR THESE CONDITIONS WHEREAS POPULATION WIDE SEX IS A MAJOR PLAYER THREE AND FOUR TIMES MORE COMMON IN BOYS THAN GIRLS WORLDWIDE. THE FACT WITH AUTISM IS MOST THE CASES THAT OCCUR IN THE POPULATION ARE OF THE INHERITED KIND. SO A LOT OF OUR WORK HAS MOVED TOWARDS UNDERSTANDING HOW DOES GENETIC VARIATION RELATE TO THE MORE COMMON FORMS OF AUTISM AND WHEN THEY'RE COMMON AND BEING INHERITED, THE NECESSITY OF DEALING WITH THAT IS THAT WE'RE DEALING WITH POLY GENIC RISK AND HOW THAT GETS TRANSMITTED IN FAMILIES. AND AS AN EXAMPLE OF HOW POWERFUL THIS IS I SHOWED THE TRANSMISSION FROM PARENTS TO THEIR CHILDREN, THIS IS AN EXAMPLE BY COLLEAGUES WHO LOOK AT THE 22Q.2 DELETION AS A MODEL OF INTENSITY GENETIC VARYING AND CHROMOSOMAL VARIATION IN A VERY WIDE OUTCOME DEPICTED AND THIS Y DISTRIBUTION AND OUTCOMES THAT'S MANIFESTED WITH CHILDREN WITH DE NOVO REARRANGEMENTS AT THAT CHROMOSOMAL REGION AND WHERE THEY WIND UP IN THE BROAD CURVE OF INTELLECTUAL OUTCOME ON THE BASIS OF THAT DEPENDS ON WHERE THEIR PARENTS FELL WITHIN THE FULLY NORMAL RANGE. SO THESE ARE PARENTS THAT DID NOT HAVE THIS PARTICULAR MUTATION. THEIR CHILDREN HAVE THE MUTATION AND THE CHILDREN'S OUTCOMES DEPENDS ESSENTIALLY ON THE GENETIC BACKGROUND OF THE PARENTS AS IT RELATES TO THE PHENOTYPE OF INTEREST, IN THIS CASE I.Q. AND THE EXACT SAME THING TRUE IS FOR AUTISTIC TRAITS AND FEATURES OF LIABILITY THAT ARE INFLUENCED BY THIS CHROMOSOMAL REARRANGEMENT AND THAT'S BEEN SHOWN FOR OTHER CHROMESOMAL REARRANGEMENTS AND STARTED THINKING WHAT MAY COLLIDE WITH PARENTAL LIABILITY FOR TRAITS AND THIS INFLUENCE ON OUTCOME, NOT A COMPLETE INFLUENCE ON OUTCOME BUT IS IT POSSIBLE TO IDENTIFY OTHER INHERITED FACTOR COLLIDE WITH THAT PARENTAL LIABILITY TO FURTHER RAMP UP RISK FOR THESE MORE INHERITED KINDS OF AUTISM. ONE OF THE CLUES THAT WE HAD IDENTIFIED FROM STUDYING TWINS IN FAMILIES WAS IDENTIFYING WITHIN BABIES WHAT PREDICTED SOCIAL VARIATION AND OUTCOME AS MEASURED BY THAT SAME QUANTITATIVE TRAIT. THE SOCIAL RESPONSIVENESS SCALE AND WHAT WE LEARNED IN STUDIES BABIES IS THAT NOT ONLY THEIR PARENTS AUTISTIC LIKE TRAITS BUT TIRE -- THEY'RE BABIES VARIATION IN TRAITS RELATED TO ADHD AND THINKING OF THESE TRAITS AND MOTOR DEVELOPMENT TRAITS THAT CAN INFLUENCE SOCIAL OUTCOMES IS SOMETHING WHERE THE PROSPECT OF SCREENING MAY INVOLVE LOOKING FOR THE THINGS FOR THE DIAGNOSIS YOU'RE INTERESTED IN AND OTHER THINGS CONTRIBUTE BEING TO IT. IN THIS CASE ONE OF THE PROFOUND LESSONS LEARNED FROM THIS PARTICULAR STUDY IS THAT EACH OF THOSE FACTORS AND THE PARENTS' AUTISTIC TRAITS AND THE MOTOR VARIATION OF THE PARENTS AND THE ADHD SYMPTOMATOLOGY AND THINK ABOUT THAT. THESE PARTICULAR QUANTITATIVE TRAITS ALL OF WHICH ARE CONTINUOUSLY DISTRIBUTED IN HUMAN POPULATION S AND INHERITED AND DIFFERENT GENETICALLY AND HOW THEY MAY COMBINED OR COLLIDE TO PRODUCE THE OUTCOMES ON THE EXTREME END REPRESENT A DIAGNOSIS OF AUTISM. ANOTHER AND COLLABORATING WITH A METHOD FOR MEASURING ONE OF THE PATHOMNEMONIC TREATS OF THE AUTISTIC SYNDROME WHICH IS EYE CONTACT. AND IN A STUDY PUBLISHED IN NATURE SHOWED WHEN YOUNG CHILDREN ARE MANIFESTING LOW LEVELS OF SOCIAL ORIENTATION TO FACES, TO THE SOCIAL FEATURES OF THE ENVIRONMENT THESE CHILDREN REALLY ARE MUCH HIGHER RISK FOR AUTISTIC SYNDROMES THAT IS IN THE RED DOTS IN THESE PARTICULAR SCATTER PLOTS AND THE WHITE DOTS IN THE SCATTER PLOTS ARE TYPICALLY DEVELOPING CHILDREN. ONE OF THE THINGS TO NOTICE IS THERE ARE SOME TYPICALLY DEVELOPING CHILDREN WHO HAVE LOW LEVELS OF HIGH AND MOUTH AND FACE LOOKING BUT NEVERTHELESS DO OKAY. DEMONSTRATING THE IDEA THERE MAY BE ASPECTS OF EARLY QUANTITATIVE DEVELOPMENTAL LIABILITY THAT MUST COMPOUND WITH OTHER ONES TO PRODUCE A SIN DROLL OF CLINICAL IMPAIRMENT. AND WA WE FOUND IN STUDYING THE RECURRENCE OF AUTISM SO WHEN A BABE E -- BABY IS BORN INTO A FAMILY AND ASKING IF THE BABY WILL DEVELOP AUTISM NOT ONLY CAN THE PREDICTION OF WHICH BABY WILL BE PREDICTED IMPROVED BY EYE TRACK AND MOTOR DEFICITS JUST LIKE WE FOUND REGARDING SOCIAL VARIATION IN THE POPULATION THESE REPRESENT OCCURRENCE PREDICTORS AND IN THE GENERAL POPULATION ARE ALL CONTINUOUSLY INHERITABLE AND GENETIC AND LED US TO BELIEVE THE STUDY OF AUTISM AT LEAST THE INHERITED VERSIONS OF AUTISM MAY RESOLVE TO RELATING SETS OF POLY GENIC RISK TO INDIVIDUAL DEVELOPMENT LIABILITIES. THIS REPRESENTS AN INFANCY DECONSTRUCTION OF THE AUTISTIC SYNDROME WHERE WE MAY BE ABLE NOW TO FOCUS OUR SCREENING EFFORTS NOT ON THE DEVELOPMENT OF THE CONDITION ITSELF OR THE CHARACTERIZING TRAITS AND FEATURES OF THE CONDITION BUT ON WHAT COMES BEFORE THAT DEVELOPMENTALLY AND ENGENDERED BY POLY GENIC FACTORS AND THE FOUR FACTORS MAY IN COMBINATIONS RELATE TO THE AUTISTIC SYNDROME AND AN IMPORTANT COROLLARY IS CHILDREN WHO ARE STUDYING IN CONTRAST TO KIDS WITH AUTISM FOR BIOMARKER STUDIES AND BRAIN IMAGING STUDIES AND SO FORTH MAY CARRY SOME OF THESE LIABILITIES THEMSELVES IN MILDER FORM OR IN COMBINATIONS NOT GOING TO PUSH CHILDREN TOWARDS THE FULL DIAGNOSIS. AND THIS KIND OF SYSTEM OF THINKING ABOUT AN INHERITED CONDITION IS AN AMALGAM OF MORE FUNDAMENTAL TRAITS IS AKIN TO THINKING ABOUT WHAT IS DEPICTED ON THE LOWER LEFT HAND OF THE SCREEN THE DIAGRAM OF WHAT CAUSES HYPERTENSION AND BLOOD PRESSURE CAN BE MEASURED AND THOUGHT OF AS A SINGLE QUANTITATIVE TRAIT BUT WHEN YOU THINK ABOUT IT IS AN AMALGAM OF A NUMBER OF TRAITS THAT ARE DYNAMICALLY OPERATING WITH ONE ANOTHER. AND ELECTROLYTE BALANCE AND CORTICOID VARIATION AND EACH HAS ITS OWN STRUCTURE AND UNDERSTANDING THE EVOLUTION OF BLOOD PRESSURE ARE TREATMENT RESOLVED TO WHAT THE FACTORS ARE. A COUPLE LAST POINTS TO MAKE AND THEN WE'LL WRAP UP. FIRST, THAT ONE OF THESE PREDISPOSING FACTORS ADHD LIKE TRAITS IS INTERESTING NOT LONG OKAY WE CONSIDERED INDEPENDENT FROM AUTISM AND NOW WE KNOW SOME OF THE THINGS WE THINK OF AS NUISANCE COMORBIDITIES OF AUTISM OR CO-OCCURRING CONDITIONS CAN BE PART OF THE CAUSE OF THE CONDITION ITSELF. AND THINKING ABOUT HOW TO SCREEN FOR THAT AND HOW TO LOOK FOR THAT EARLY WILL BE A VERY IMPORTANT PART OF THE NEXT GENERATION OF SCREENING. ANOTHER VERY IMPORTANT PRINCIPLE WE LEARNED FROM STUDYING IN A QUANTITATIVE WAY THOUGH 85% OF AUTISM IS INHERITED, THE DIAGNOSIS ITSELF IS INHERITED BUT THE SEVERITY OF THE CONDITION CAN VARY GREATLY EVEN BETWEEN TWO INDIVIDUALS WHO ARE CLONES OF ONE ANOTHER. SO IN STUDYING IDENTICAL TWINS WHO MOST THE TIME IF ONE'S AFFECTED THE OTHER ONE'S GOING TO BE AFFECT AUTISM, THERE'S SYMPTOMS CAN DIFFER PROFOUNDLY AND NA IS NOT TRUE FOR CHILDREN IN THE POPULATION WHO ARE IDENTICAL TWINS WHO GENERALLY SHARE THE EXACT SAME LEVEL OF QUANTITATIVE AUTISTIC BURDEN AND YOU START TO SEE VARIATION THAT MAY RELATE TO STOCHASTIC INFLUENCES OVER THE COURSE OF DEVELOPMENT AND HAVE TO BE THOUGHT ABOUT AS FAR AS PLAYERS IN THE SYNDROME. AND THERE'S A PLOT THAT SHOWS THE COMORBIDITY OF AUTISM LONG-TERM AND THE LIKELY CAUSE IS THE INABILITY TO DELIVER TO THOSE CHILDREN THE EVIDENCE BASE FOR EDUCATION AND EARLY DEVELOPMENT THERAPIES THAT WOULD ALLOW THEM TO REACH A BETTER LEVEL OF FUNCTIONING GIVEN THE CONDITION OF AUTISM OF BEING A PART OF THEIR DEVELOPMENTAL MAKE UP. SO CONCLUSIONS, WHAT SHOULD WE BE SCREENING FOR? NOT JUST DIAGNOSIS, A AN AMALGAM OF PHENOTYPES THERE'S COMPOUNDING FACTORS WE NEED TO SCREEN FOR AND ADDRESS PARTICULARLY THE ONES WE HAVE THE POWER TO CHANGE. I WANT TO ACKNOWLEDGE OUR EXCELLENT CONTRIBUTORS TOO THE WORK AS I MENTIONED OVER THE COURSE OF THE TALK AND THANK EVERYBODY FOR THE OPPORTUNITY AGAIN TO JOIN THIS WONDERFUL SYMPOSIUM. THANK YOU. >>THANK YOU, JOHN. OUR FINAL SPEAKER TODAY IS MICHELLE JOHNSON FROM THE UNIVERSITY OF PENNSYLVANIA UNFORTUNATELY, SHE HAS BEEN PULLED AWAY TO JURY DUTY. SHE IS DOING HER CIVIC DUTY RIGHT NOW BUT WAS ABLE TO PRE RECORD HER PRESENTATION. AND DR. JOHNSON DIRECTS THE REHABILITATION ROBOTIC RESEARCH AND DESIGN LABORATORY WHERE SHE SPECIALIZES IN THE DESIGN DEVELOPMENT AND THERAPEUTIC USE OF NOVEL, AFFORDABLE INTELLIGENT ROBOTIC ASSISTANCE FOR REHABILITATION IN HIGH AND LOW RESOURCED ENVIRONMENT. SHE HAS A BACHELOR'S OF SCIENCE IN MECHANICAL ENGINEERING AND A FULL BRIGHT SCHOLAR TO BOTSWANA AND A DISTINGUISHED LECTURER. I'LL TURN IT OVER TO MICHELLE'S VIDEO. >>HI. THANK YOU FOR INVITING ME. TODAY I'M GOING TO APPROACH THIS TOPIC OF ENSURING HEALTHY AND OPTIMAL LIVES FROM THE PERSPECTIVE OF ACCESSIBLE AND AFFORDABLE ROBOTIC TECHNOLOGIES THAT I BELIEVE SHOULD BE OUR GOAL IN THE FUTURE. I JUST HAVE A FEW FINANCIAL DISCLOSURES. ONE I MAY BE TALKING ABOUT SOME PATENT HAVE BEEN FILED ON REHAB CARE AND A HAVE EQUITY IN A SPINOFF COMPANY CALLED COOPERAL ROBOTICS. WE THINK ABOUT WHAT'S HAPPENING IN HIGH-INCOME COUNTRIES AND IN LOW AND MIDDLE-INCOME COUNTRIES AND THE CAUSES OF DEATH AND IMPAIRMENT ARE DIFFERENT. IN HIGH-INCOME COUNTRIES COMMUNICABLE DISEASES AND OUR STRATEGIES IN TERMS OF THINKING ABOUT WHAT IS CAUSING THIS WE SHOULD REALIZE BOTH ARE CAUSING PEOPLE TO LIVE WITH MORE MOTOR IMPAIRMENT AND COGNITIVE IMPAIRMENT. THERE'S A GROUP OF PEOPLE THAT'S GROWING AND LIVING WITH THESE IMPAIRMENTS BUT AT THE SAME TIME WE HAVE A SHORTAGE OF CAREGIVERS. WE HAVE A SHORTAGE OF CLINICIANS, THERAPISTS AND WHAT WE'RE RUNNING INTO IS A GAP IN HEALTH CARE. THIS GAP IS ONLY GOING TO INCREASE. IN MY OPINION I BELIEVE TECHNOLOGY CAN HELP BRIDGE THIS GAP. AND THE TYPE OF TECHNOLOGIES I'M TALKING ABOUT I'M TALKING ABOUT THERAPY AND ASSISTIVE TECHNOLOGIES. THE THERAPY ROBOTS ARE AS YOU CAN SEE FROM THE IMAGES ARE ROBOTS THAT WE'RE GOING TO DESIGN TO HELP TREAT NEUROLOGICAL DISORDERS SUCH AS STROKE AND CEREBRAL PALSY AND WHATEVER ELSE IS HAPPENING. WE CAN TARGET THEM FOR DIFFERENT DISEASE STRUCTURES. THE GOAL IS THEY'RE GOING TO AUTOMATE AND DELIVER A AUTONOMOUS THERAPY AND ASSESS THE LEVEL OF IMPAIRMENT HAPPENING WITH THE PERSON. WHEN I TALK ABOUT ASSISTIVE ROBOTS I'M TALK THIS IS REPLACING OTHER FUNCTIONS OR SERVING PEOPLE WITH DISABILITIES. NOW, THE CURRENT SYSTEMS YOU SEE ARE MAINLY AVAILABLE IN SUPERVISED SETTING AND IN HOSPITAL PATIENTS IN PATIENT OR OUT PATIENT. ONE THING I WANT TO DO IS CLARIFY. WHEN I THINK OF ROBOTS IN THE SETTING I'M THINKING THEY'RE SHARING THE SPACE WITH THE CAREGIVER. IN THIS PICTURE YOU SEE THE IF THE THERAPIST IS DEMONSTRATING SOMETHING HOW DOES THE THERAPIST USING THE ROBOT TO BE A DEMONSTRATOR. THE THERAPIST IS HELPING THE PATIENT AND HOW TO USE THE ROBOT TO SUPPORT THE PATIENT. I ALWAYS WANT TO VERY MUCH EMPHASIZE THAT MY THINKING IS THE ROBOT IS CO-LOCATING WITH THE CAREGIVER. HERE'S AN ACTIVITY AND HERE WE WERE AUTOMATING THE ROBOT TO SUPPORT THE UPPER EXTREMITY OF A STROKE SURVIVOR TO PRACTICE DRINKING ACTIVITIES. HERE'S AN EXAMPLE OF DEMONSTRATING IN ASSISTIVE ROBOT HERE WITH MY COLLEAGUES WE WERE LOOKING AT USING HUMANOID ROBOTS TO SUPPORT PLAY OF OLDER ADULTS MAYBE IN A COMMUNITY HEALTH SETTING,ETS ARE RA -- ETCETERA. AND WE'VE BEEN DOING THIS OVER 20 YEARS AND PEOPLE HAVE THOUGHT OF USING THE ROBOTICS IN THE CLIMATE. WHAT DID WE LEARN? WE LEARNED THEY'RE EFFECTIVE FOR THE MOST PART IN THE UPPER EXTREMITY, PHYSICAL THERAPY HAS BEEN ABLE TO DELIVER. IT'S REPEATABLE AND ADAPTIVE. WE CAN ACTUALLY ENABLE SEMI AUTONOMOUS TRAINING. WE CAN SEE WE CAN PROVIDE REPEATABLE MEASURES AND REDUCE RECOVERY AND IMPAIRMENT. THIS IS NOT WITHOUT CONTROVERSY DEPENDING ON WHERE WE'RE THINKING WHICH ROBOTS WE ARE USING THERE MAY BE SOME DISPUTE IN THAT. I WANT TO BRING OUR ATTENTION TO ANOTHER POINT IS THAT A RECENT PAPER OR SYSTEMATIC REVIEW LOOKED AT WHETHER IT WAS COST EFFECTIVE TO DO THESE ROBOTS AND TO USE THE ROBOTS AND THEY WERE PRIMARILY LOOKING AT TO THE STUDIES THAT SHOWED WHETHER WE SHOULD KEEP GOING AND ONE THING THEY SHOWED THERE WERE ONLY FIVE STUDIES INCLUDE ONE MY COLLEAGUE LOOKED AT THAT LOOKED AT WHETHER THE EASE OF THE ROBOTS COULD SUPPORT PEOPLE GOING FORWARD AND THE UPTAKE IS, YES. THE STUDIES FAVOR THE USE OF ROBOTS IN TERMS OF INTERVENTION WITH ACUTE AND CHRONIC PATIENTS AND SOME SEVERE AND THAT IS ENCOURAGING. THAT TELLS US WE MIGHT BE ABLE TO REALLY SERIOUSLY THINK ABOUT HOW WE USING IT BUT MY CHALLENGE WITH THIS IS WHERE ARE THESE ROBOTS NOW? THEY'RE GLOBALLY MAINLY IN HIGH INCOME COUNTRIES. BUT THE BURDEN OF THE DISEASES THAT WE'RE SEEING ARE IN LOW AND MIDDLE-INCOME COUNTRIES AND IN THINKING HOW WE MOVE FORWARD IN THE FUTURE, I THINK WE NEED TO MOVE FORWARD GLOBALLY SO WHEN WE'RE THINKING ABOUT THE USE OF THESE TECHNOLOGIES, HOW DO WE GET THEM INTO LOW-RESOURCE SETTINGS AND INTO DEVELOPING COUNTRIES. MAIN PROBLEM IS WITH THE CURRENT SYSTEMS THEY'RE MECHANICALLY HUGE AND HIGH COST AND HOW DO WE BRIDGE THIS GAP AND MY VIEW IS IS WITH AFFORDABLE TECHNOLOGY AND LET'S STEP BACK AND THINK WHAT THE FUTURE IS LIKE. WHAT WE SEE HAPPENING IN HIGH-INCOME COUNTRIES INCLUDING THE U.S. WE SEE THERAPY AND REHAB IS MOVING OUT OF THE ACUTE AND SUB-ACUTE SETTINGS INTO THE COMMUNITY-BASED SETTINGS. A RECENT STUDY SHOWED 75% OF PATIENTS THAT ARE DISCHARGED AND I'M SPEAKING SPECIFICALLY AT STROKE WILL BE GOING HOME AND STILL HAVE VISUAL IMPAIRMENT. 40% GO HOME WITHOUT POST-ACUTE CARE. THAT MEANS REHAB IT TAKING PLACE IN THE COMMUNITY AT HOME IN NURSING HOMES IN DAYCARE SETTINGS IN ASSISTED LIVING SETTINGS AND THESE ARE OFTEN LOW RESOURCE SETTINGS. IN LOW AND MIDDLE INCOME COUNTRIES THE ISSUE IS MORE COMPOUNDING. WHY? WE SEE IT'S NOT UP THERE WITH CURATIVE MEDICINE OR PREVENTIVE BUT MAY NOT IN AS CENTRALIZED. SO PEOPLE WITH DISABILITIES ARE NOT GETTING THE TYPE OF CARE THEY NEED. THE ACCESS TO REHAB IS LOW AND WITH THE CHART YOU CAN SEE AFRICA AND SOME OF THE REGIONS THAT THE NUMBER OF FOR EXAMPLE OF PHYSIO THERAPISTS OR MEDICAL DOCTORS ARE QUITE LOW SO SKILLED THERAPIST AND LOW DOCTOR RATIOS MAKE THIS MORE IMPORTANT WE REALLY THINK HOW WE CAN MAKE THIS TECHNOLOGY AVAILABLE ESPECIALLY SINCE IT'S PROMISING. THE WORLD HEALTH ORGANIZATION PUT OUT THIS REHABILITATION 2030 CALL FOR ACTION AND THEY SAY THERE'S A CLEAR MISMATCH BETWEEN THE GLOBAL NEED FOR REHAB AND THE AVAILABILITY OF SERVICES. ESSENTIALLY MORE NEEDS TO BE DONE. OUR ASPIRATION IS WE'VE BECOME A PART OF STRATEGY OF CARE FROM A PUBLIC HEALTH PERSPECTIVE IT SHOULD BE UP THERE WITH PREVENTATIVE AND CURATIVE CARE. ANOTHER POINT IS THAT ANOTHER STUDY DONE FROM SOME COLLEAGUES IN NIGERIA LOOKED AT SOLUTIONS FOR STROKE RECOVERY, IMPROVED QUALITY OF LIFE IN LOW AND MIDDLE-INCOME COUNTRIES AND SAID ROBOTS ARE NOT AFFORDABLE DESPITE THEIR HIGH COST BUT THE LIKELY ADVANTAGE IS THEY WOULD AUTOMATE INTERVENTIONS FOR ROBOT THERAPY AND THEREFORE BRIDGE THE GAP IN SHORTAGE OF REHAB PROFESSIONALS IN TERMS OF TIMES AND EFFORT. SO HOW DO WE BUILD AFFORDABLE ROBOTS THAT WOULD MAKE REHABILITATION MORE ACCESSIBLE BUT ALSO SERVE THE PEOPLE ON THE GROUND, THE CLINICIANS ON THE GROUND? SO MY POINT IS HOW DO WE MAKE THEM MORE AFFORDABLE? AND WHAT DO WE MEAN BY AFFORDABLE TO THE EXTENT TO WHICH WHEN YOU'RE IN THAT ENVIRONMENT YOU CAN AFFORD A TECHNOLOGY THAT IS ABLE TO BE THAT IS COST EFFECTIVE WITHIN THAT ENVIRONMENT. WHAT DO I MEAN? ONE OF THE WORLD HEALTH ORGANIZATION TALKED ABOUT COST EFFECTIVE IN TERMS OF REHABILITATION STRATEGIES AND THEY SAY SOMETHING IS COST EFFECTIVE IF IT IS LESS THAN HIGHLY COST EFFECTIVE IF IT'S LESS THAN ONE GDP PER CAPITA AND VERY COST EFFECTIVE IS BETWEEN 1 AND 3 GDP AND WE LOOK AT THE GDP AND WE CAN SUPPORT MORE EXPENSIVE SYSTEMS BUT WHEN WE LOOK AT BOTSWANA AND I DO GLOBAL WORK AND ALSO IN JAMAICA AND MEXICO, THE GDP IS MUCH LESS THAN WHAT WE SEE IN THE U.S. SO WHEN WE THINK ABOUT AFFORDABLE TECHNOLOGIES APPLIED IN THAT PARTICULAR ENVIRONMENT WE NEED TO BE A LOT MORE -- WE NEED TO THINK HOW CAN WE BE CHEAPER AND DELIVER GOOD CARE AT MUCH LESS OF A PRICE. MYSELF AND COLLEAGUES DID A REVIEW ABOUT AFFORDABLE ROBOTS FOR UPPER EXTREMITY REHAB IN DEVELOPING COUNTRIES AND WE SAW THEY WERE OUT THERE AND THERE WERE SOME POTENTIAL STRATEGIES THAT COULD BE USED AND ONE IS MORE LOW-COST ROBOTICS AND MEGATRONIC SYSTEMS AND USE ROBOTS WITH 3-D PRINTING, SOFT ROBOTS, FOUND MATERIALS SO WE CAN UTILIZE WHAT'S IN COUNTRY. ANOTHER IDEA MIGHT BE TO USE MULTIPLE ROBOTS THAT ARE LOWER DEGREES OF FREEDOM BUT COMING TOGETHER TO DO CARE AND CAPITALIZE ON LOCAL MANUFACTURING AND RESOURCES. THIS IS AN EXAMPLE OF SOMETHING WE DID WITH MEXICO WHERE WE USED A MEGATRONIC SYSTEM THAT WAS A FORCE FEEDBACK REEL AND WHAT WE DID THAT WAS INTERESTING IN TERMS EF THE IDEA OF MULTI PURPOSE USE AND SEVERAL DEVICES OR TECHNOLOGY SYSTEMS USED TOGETHER AND THE CARE ALMOST LIKE A CIRCUIT TRAINING WHERE WE HAVE THE STROKE SURVIVORS GOING FROM ONE TO ANOTHER STATION IN ORDER TO GET THE TYPE OF COMPREHENSIVE CARE THAT IS NEEDED. THAT LED TO THINKING ABOUT THE REHAB GYM IDEA AND USING SIMPLE ROBOTS TOGETHER IN A GROUP THEY CAN THEN LEAD TO MORE COMPREHENSIVE SERVICE. WE ACTUALLY ENDED UP LEARNING FROM OUR EXPERIENCE IN MEXICO AND THIS LED US TO THE ROBOT WE BUILT THAT IS ABLE TO TRAIN PEOPLE WITH MODERATE AND LOW IMPAIRMENT IN TERMS OF MOTOR IN A GAMING ENVIRONMENT SO PEOPLE ARE ABLE TO TRAINING THE UPPER EXTREMITY. IT'S ONE DEGREE OF FREEDOM BUT YOU CAN RECONFIGURE THE ROBOT IN DIFFERENT POSITION TO GET MORE OF A COMPREHENSIVE WORKOUT OF THE UPPER EXTREMITY. ANOTHER CASE STUDY OF HOW WE'RE THINKING OF USING AFFORDABLE ROBOTS WE ARE LOOKING AT THE USE FOR ASSESSMENT PURPOSES ASSESSING MOTOR AND COGNITIVE IMPAIRMENT IS NOT BEING DONE OFTEN ESPECIALLY IN LOW RESOURCE SETTINGS IT'S VERY DIFFICULT TO DO. SO HOW DO WE LOOK TO USING AFFORDABLE ROBOTS TO SUPPORT THAT. THIS IS A CASE STUDY OF DEVELOPING INTERESTING AND NOVEL COGNITIVE AND MOTOR ASSESSMENTS THAT CAN BE DONE WITH ROBOTS TO BE ABLE TO PROVIDE FEEDBACK TO CLINICIANS IN WHERE THEY SHOULD START IN TERMS OF TREATMENT OF A STROKE SURVIVOR OR SOMEONE WITH HIV FOR EXAMPLE. THIS IS ANOTHER REALLY NOVEL USE OF ROBOTIC SYSTEMS. IN TERMS OF TAKING IT FURTHER, WE'VE DONE SOME WORK IN BOTSWANA WHERE WE HAVE THE ONE-DEGREE OF FREEDOM SYSTEMS AND PUT THEM TOGETHER FOR INSTANCE TWO ROBOTS AND TWO WORKING TOGETHER ONE TO BE ASSESSED AND ONE IN THERAPY WITH ONE PATIENT OR ONE CLINICIAN SEEING THE OPERATION. IE, OUR GOAL IS HOW CAN WE USE THE AFFORDABLE ROBOTS TO DO ONE CLINICIAN TO DO MORE WORK WITH THE POPULATION THEY'RE SEEING. SO SOME OF THE THINGS WE LEARNED TO REINFORCE FROM IN TERMS OF THE AFFORDABILITY STRATEGIES USING IN-COUNTRY LABOR, USING MATERIALS AND SUPPLIES THAT ARE AVAILABLE IN COUNTRY. THINKING ABOUT THE SIMPLEST ROBOTS AND LAYERING THEM ON TO THE SYSTEM FOR RECONFIGURABILITY FOR THEM TO DO THE JOB OF THE MORE COMPLEX ROBOTIC SYSTEMS THAT ARE IN HIGHER INCOME COUNTRIES. WE'VE ALSO LOOKED AT THIS ISSUE IN TERMS OF SOCIAL ROBOTS THINKING ABOUT USING ROBOTS AND MORE AFFORDABLE ROBOTS IN TERMS OF REMOTE AND TELEPRESENCE AND BEING ABLE TO PROVIDE THIS ROBOT, FOR EXAMPLE, IN A LOW RESOURCE SETTING WHILE THE CLINICIAN MIGHT NOT BE CO-LOCATED WITH THE ROBOT SO THE CLINICIAN IS IN THE RURAL OR YOU'RE -- URBAN SPACE AND THE ROBOTS ARE SUPPLEMENTING IN THE PRIMARY CARE SPACES. WE'RE ALSO THINKING ABOUT THIS IN TERMS OF INFANTS. THINKING ABOUT AFFORDABLE MEGATRONIC TOYS THAT CAN BE USED OUTSIDE THE HOSPITAL SETTINGS BY CLINICIANS AND PARENTS AND THAT INFORMATION GETS FEDBACK. HOW DO WE USE MOBILE HEALTH TECHNOLOGY AND THESE TYPE OF TECHNOLOGY TO CAPTURE INFORMATION ABOUT WHAT PEOPLE ARE DOING AND THEN PROVIDE THIS INFORMATION TO THE CLINICIAN SO THEY CAN ASSESS AND TREAT WITHOUT NEEDING AS MANY CLINICIANS THAT ARE OBVIOUSLY NOT AVAILABLE IN THE LOW-RESOURCE SETTING. SO I WANT TO STOP BY SAYING HERE'S SOME OF THE GUIDELINES WE'VE ESSENTIALLY THINK THAT IN THE FUTURE WE NEED TO BE THINKING ABOUT. THAT WE WANT TO GET THESE ROBOTS INTO LOW-RESOURCE SETTINGS, LOW-MIDDLE INCOME COUNTRY AND SHOULD BE AFFORDABLE AND SHOULD NOT COMPROMISE ON EFFECTIVENESS AND SHOULD BE COMMUNITY BASED. WE SHOULDN'T ALWAYS THINK OF ONE-ON-ONE STRATEGIES BUT CAN WE GET MORE GROUP TYPE THERAPY HAPPENING? THEY SHOULD BE APPROPRIATE TO THE SETTING AND WE SHOULD BE THINKING HOW TO BUILD CAPACITY IN WHATEVER SETTINGS WE ARE ESPECIALLY IN RURAL RESOURCED SETTINGS WHERE MAYBE THE ACCESS OF FULL EXPERTS ARE NOT ALWAYS AVAILABLE. I WANT TO THANK THE SPONSORS AND NIH, ETCETERA AND I'LL STOP THERE. >>THANK YOU. WE HAVE EIGHT MINUTES BY MY CLOCK. SO I'M GOING TO TRY TO GET ONE QUESTION TO EACH OF OUR SPEAKERS. SINCE I'M THE MODERATOR, I GUESS TO PICK THE QUESTION. JUDY, I THINK WE'RE FAMILIAR WITH RACISM AND SEXISM BUT I DON'T THINK WE'RE FAMILIAR WITH ABLISM. CAN YOU TALK A LITTLE BIT ABOUT WHAT NICHD CAN DO TO DRAW MORE ATTENTION TO ABLISM? >>WELL, THINK THE WORD NEEDS TO BE USED. I THINK WE NEED TO HAVE DISCUSSIONS ABOUT WHAT ABLISM IS IN A MORE SPECIFIC WAY. THOSE PEOPLE LIKE MYSELF AND OTHERS WHO EXPERIENCE IT NEED ON THE ONES LEADING THE DISCUSSION. AND I FEEL LIKE IT'S VERY INTERESTING BECAUSE TERMINOLOGY AND DISABILITY IS SOMETHING WE'RE GRAPPLING WITH AND I APPRECIATED WHEN YOU SAID WE'LL USE THE TERM PEOPLE WITH DISABILITIES AND DISABLED PEOPLE INTERCHANGEABLY AND A RESPECT THAT A LOT BECAUSE I AM A DISABLED PERSON LANGUAGE USER BUT I RESPECT PEOPLE WHO USE PEOPLE WITH DISABILITIES. THE REASON I SAY IT'S IMPORTANT IS BECAUSE WE'RE MORE ACCEPTING AS A SOCIETY THAT RACISM EXISTS, THAT HOMOPHOBIA EXISTS AND SEXISM EXISTS BUT WE'RE NOT REALLY ACCEPTING OF THE FACT THAT DISCRIMINATION EXISTS AGAINST DISABLED PEOPLE. MANY PEOPLE STILL FEEL LIKE, OH, THEY DIDN'T MEAN IT, THEY DIDN'T KNOW IT, THEY DIDN'T UNDERSTAND IT. AND THEY SOFT PEDAL IT. A DISCUSSION AROUND ABLISM WHICH WAS HANDICAPISM WHEN I WAS YOUNGER IS HOW I BELIEVE ENABLES PEOPLE WITH THE BREADTH OF DISABILITIES THAT EXIST TO ALSO BE ABLE TO DISCUSS IN A MORE IN DEPTH WAY THE TYPES OF EXPERIENCES THEY HAVE AND HOW PEOPLE EXPERIENCE MANY OF THESE SITUATIONS IN A WAY WHICH IS DEMEANING AND REPRESSES PEOPLE'S ABILITY TO BRING THEIR WHOLE SELF TO THE TABLE. >>THANK YOU. OKAY, CLAIRE. SO I'M TRYING TO THINK OF THE IMPLICATIONS FOR TREATMENT FOR YOUR DISCOVERIES ABOUT INFLAMMATORY RESPONSES TO NERVE AXON INJURY. SO ARE THERE SYSTEMIC TREATMENTS, ANTI-INFLAMMATORIES WE COULD BE USING MORE GENERALLY OR DOES IT NEED TO BE TARGETED TO THE SPECIFIC NEURONS? >>THAT'S A GREAT QUESTION. I THINK THE ANSWER IS WE NEED TO FIGURE OUT WHAT THOSE INFLAMMATORY CELLS ARE DOING FIRST BEFORE I CAN REALLY ANSWER THE QUESTION. IT'S INTERESTING TO SEE THIS HAPPENS IN A VERY STEREOTYPICAL WAY BUT WE ACTUALLY DON'T REALLY KNOW EXACTLY WHAT THE CONSEQUENCES ARE IN TERMS OF WHAT THE MICROGLIA ARE DOING. WE KNOW THEY COME IN A WAVE AND THEN GO AWAY. MY SENSE IS THEY'RE DOING SOMETHING ACUTELY AND WOULD BE USEFUL TO TARGET IN THAT WINDOW BUT YOU HAVE TO KNOW -- I GUESS IN TERMS OF APPLICATIONS, THE WAY I THINK ABOUT THE POTENTIAL USE FOR THIS IT WOULD DEFINITELY BE IN THE CONTEXT OF A TRAUMATIC INJURY OR SOMETHING WHERE YOU KNOW WHEN THE INJURY HAPPENED AND LESS SO IN THE CONTEXT OF A CHRONIC CONDITION. I HOPE THAT ADDRESSES YOUR QUESTION. >>THANK YOU. AND JOHN, THIS IS A QUESTION FROM THE AUDIENCE, YOUR WORK SEEMS TO HAVE IMPLICATIONS FOR THE VERY DEFINITION OF A PSYCHIATRIC DISORDER DO YOU THINK DFM SHOULD BE REORGANIZED? DON'T THEY DO THAT EVERY SO OFTEN AND IF SO HOW DO YOU RECOMMEND GOING ABOUT IT? >>I LOVE THIS QUESTION BECAUSE ONE OF THE THINGS THAT HAS BEEN LEARNED ABOUT MOST PSYCHIATRIC CONDITIONS OF ALL PEOPLE IS THAT THERE ARE A RELATIVELY FINITE NUMBER OF DEVELOPMENT PSYCHIATRIC LIABILITIES THAT CONFER RISK FOR MULTIPLE DISORDERS AND CONFER A LOT OF RISK. FOR EXAMPLE, FUNDAMENTAL TRAITS THAT HAVE BEEN REFERRED TO IN A NUMBER OF THE PRIOR TALKS SUCH AS THE DIFFICULTY WITH REGULATING EMOTION, THE PRONENESS TO IMPULSIVITY OR ANXIETY-RELATED TRAITS, THESE CROSS OVER ALMOST ALL THE DIFFERENT NEUROPSYCH PSYCHPSYCH NEUROPSYCHIATRIC CHARACTERISTICS OF PEOPLE AND THE SAME WILL BE POSSIBLE FOR MOST NEUROPSYCHIATRIC DISORDERS OF PEOPLE WITH THE OTHER POINT TO MAKE WITH THE PROTOTYPIBLE SCHIZOPHRENIA HAS SHOWN AT THE FAR END OF THAT SYNDROME YOU START TO SEE THE EMERGENCE OF WHAT ARE VERY PRONOUNCED STOCHASTIC AFFECTS ON DEVELOPMENT WHICH IN SCHIZOPHRENIA TRANSLATES TO THE CONCORDANCE RATE ONLY BE 45%. THINK ABOUT THAT. HOW ON EARTH WITH THE CAUSATION OF A CONDITION IN ONE IDENTICAL TWIN REARED TOGETHER ONLY CAUSE IT 45% OF THE TIME? I THINK WHEN WE START TO THINK ABOUT NEUROPSYCHIATRIC CONDITIONS AS ENGENDERED BY DEVELOPMENT A SHORTER LIST OF DEVELOPMENT LIABILITIES THAN THE THOUSAND DS DIAGNOSES AVAILABLE AND THE SIGNATURE IN HUMAN BEHAVIORAL TRAITS THAT ARE ASSOCIATED WITH IMPAIRMENT FOR A HIGH LEVEL OF BURDEN IS THIS INFLUENCE OF STOCHASTIC EFFECTS, WE CAN START TO UNDERSTAND IN A DIFFERENT WAY HOW TO DRAW THE LINES AND UNDERSTAND WHEN DOES A VARIATION OF HUMAN BEHAVIOR THAT'S BEEN INHERITED TURN INTO WHAT WE WOULD CALL SOMETHING THAT IS IMPAIRING ENOUGH OR DIFFICULT ENOUGH FOR ADAPTATION TO BE CALLED A DIAGNOSED CONDITION. >>THANK YOU SO MUCH TO OUR PANEL. >>RESEARCHERS WHO STUDY HUMAN DEVELOPMENT RELY ON ANIMAL MODELS LIKE ZEBRAFISH TO GAIN INSIGHT IN GROWTH AND HOME. THEY HAVE AN ADVANTAGE OVER OTHER ANIMAL MODELS BECAUSE THEY DEVELOP QUICKLY WITHIN A FEW DAYS. THEY'RE ALSO TRANSPARENT ENABLING RESEARCHERS TO VISUALIZE DEVELOPMENT IN REAL TIME. A FERTILIZED ZEBRAFISH EGG HAS THE SINGLE CELL, YOKE AND THE PROTECTIVE MEMBRANE. AFTER THE FIRST CELL DIVISION CELLS CONTINUE TO DIVIDE SIM ET LIKELY AND AFTER THE EMBRYO'S GENETIC INSTRUCTION TAKES OVER AND THE NEXT STEP IS WHERE THE EMBRYO FORMS THREE DISTINCT LAYERS TO DEVELOP INTO DIFFERENT TYPES OF TISSUE. THEN THE EYE DEVELOPS. LATER THE EMBRYO MOVES FOR THE FIRST TIME. PIGMENT CELLS PROVIDE COLOR FORM IN THE EYES AND TRUNK OF THE BODY. THE HEART BEATS AND BLOOD CELLS MOVE THROUGH BLOOD VESSELS. NOW THE EMBRYO IS READY TO HATCH IN THREE MORE DAYS AFTER THE YOKE IS ABSORBED THE LARVAE WILL BEGIN TO EAT. HI, THIS IS CONGRESSWOMAN JAMIE HERRERA BUTLER. THANK YOU FOR INVITING MANY TO SPEAK FOR THE EUNICE KENNEDY SHRIVER INSTITUTE OF HEALTH AND HUMAN DEVELOPMENT. I'VE WORKED TO PRIORITIZE ISSUES IMPORTANT TO THE NATIONAL INSTITUTE OF CHILD HEALTH AND CHILD DEVELOPMENT. IMPROVING MATERNAL AND CHILD HEALTH IS IMPORTANT TO ME. ONE AREA WITHIN MATERNAL HEALTH THAT'S BEEN A MAJOR FOCUS IS COMBATTING THE GROWING MATERNAL MORTALITY CRISIS. IN 2018 I WAS ABLE TO GET LANDMARK LEGISLATION SIGNED INTO LAW CALLED THE PREVENTING MATERNAL DEATHS ACT. THIS WAS A CRUCIAL FIRST STEP IN HELPING BEGIN TO UNDERSTAND THE EPIDEMIC OF MATERNAL MORTALITY THAT'S PLAGUING OUR NATION. OUR WORK IN THE MATERNITY CARE CAUCUS LED TO OTHER ADVANCES TO PROMOTE WOMEN'S HEALTH. ONE ISSUE IS RELATED TO MATERNITY RELATED MENTAL HEALTH CHALLENGES. PARTICULARLY MOMS WITH POSTPARTUM DEPRESSION TO HELP COMBAT THE ISSUE THE CAUCUS WAS ABLE TO ADVANCE THE FORMATION OF THE FIRST EVER MATERNAL MENTAL HEALTH HOT LIGHT -- HOT LINE. THERE'S VOICE AND TECH SUPPORT TO THOSE IN MENTAL HEALTH CRISIS. AND ON THE CHILDREN'S HEALTH SIDE OF THE COIN I'VE WORKED TO ENSURE HIGH QUALITY AFFORDABLE HEALTH CARE IS AVAILABLE TO CHILDREN ACROSS THE NATION. IN 2019, MY BILL THE ADVANCING CARE FOR EXCEPTIONAL KIDS ACT AS A WAY TO HELP CHILDREN SUFFERING FROM CANCER AND HEART TREATMENTS AND THE ACE KIDS ACT HELPED IMPROVE ACCESS TO FACILITIES. I'M ALSO ADVANCING PRIORITIES RELATE TO HISPANIC HEALTH. I WAS PROUD WHEN OUR MATERNAL CARE CAUCUS WAS ABLE TO SOLVE A LARGE ISSUE FOR HISPANIC MATERNAL CARE. FOR CENTURIYIES CORN MASA STAPL LACKED FOLIC ACID. WE FOUGHT TO HAVE IT ADDED TO PREVENT LIFE-THREATENING BIRTH DEFECT. I KNOW THERE'S SO MUCH MORE WORK TO BE DONE AND VALUE THE WORK YOU'RE DOING TO MAKE HEALTH CARE MORE ACCESSIBLE TO MORE AMERICANS. THANK YOU FOR INVITING KNOW SPEAK WITH YOU TODAY. I HOPE YOU ALL HAVE A SUCCESSFUL AND WONDERFUL EVENING. >>OUR FINAL SESSION ADDRESS HOW'S WE'RE CULTIVATING THE NEXT GENERATION OF RESEARCHERS. OUR MODERATOR IS DR. UNA GREWAL OF POPULATION HEALTH RESEARCH IN THE NICHD DIVISION OF INTRAMURAL RESEARCH. >>GOOD AFTERNOON, EVERYONE. AND WELCOME TO THE FINAL PANEL OF THE DAY. I'M UNA GREWAL AND I WILL HAVE PRESENTATIONS UNDERTAKING THE ACADEMIC TRANSITION AND THERE'LL BE AN OPPORTUNITY TO ASK QUESTIONS. DURING THE PANEL, PLEASE SUBMIT ANY QUESTIONS TO THE E-MAIL ADDRESS NICHDPRESS@MAIL.NIH DOT -GOV. THE FIRST SPEAKER IS AISHA BURTON IN THE DIVISION OF INTRAMURAL RESEARCH. DR. BURTON WAS RECENTLY AWARD THE NINDS POST-DOCTORAL RESEARCH TRAINING AWARD AND LISTED IN CELL MENTOR'S LIST OF 1,000 INSPIRING BLACK SCIENTISTS IN AMERICA. IN ADDITION TO HER RESEARCH, SHE MENTOR AS A POST-BAC FELLOW AND TEACHES AS AN ADJUNCT INSTRUCTOR AT RECEIVED HER B.A. IN CHICAGO AND COMPLETED HER DOCTORAL WORK ON BACTERIAL TRANSCRIPTION FACTOR AT INDIANA UNIVERSITY SO WITHOUT FURTHER DO JOIN ME IN WELCOMING DR. AISHA BURTON. >>THANK YOU SO MUCH FOR THAT INTRODUCTION AND GOOD AFTERNOON, EVERYONE. IT'S GREAT THAT YOU ARE HERE WITH US TODAY. AND SO HOPEFULLY YOU CAN SEE MY PRESENTATION THAT WE HAVE FOR YOU ALL. SO WE'LL GET INTO MY RESEARCH JOURNEY. I START AT NORTHWESTERN UNIVERSITY WHERE I GOT MY FIRST OPPORTUNITY. I WAS FRESHLY OUT OF HIGH SCHOOL AND DIDN'T KNOW WHAT RESEARCH WAS AND YOU SAID RESEARCH LAB I THOUGHT OF MAINLY OLDER WHITE MEN IN LAB COATS DOING SCIENCE. SO I HAD THIS UNIQUE OPPORTUNITY TO GO INTO THIS LAB AND COMMUNICATE FROM THE SOUTH SIDE OF THE CITY INTO DOWNTOWN CHICAGO. AND I CALLED MY MOM ONE DAY AND SAID I WORKED AND SHE TOLD ME NOT TO BRING IT HOME AND IT'S ONE POINT WHERE I CAN EDUCATE PARENTS ABOUT E. COLI THAT'S A TOOL ON RESEARCH AND NOT JUST WHAT YOU HEAR ONLINE OR ON TV. WITH THAT I STILL WAS INTERESTED IN RESEARCH AND A WENT TO UNIVERSITY OF ILLINOIS AT CHICAGO AND I MAJORED IN CHEMISTRY AND MINERED -- MINORED IN BIOLOGY. I HAD EXPERIENCE IN A LAB AND I SMELLED LIKE BREAD EVERY DAY AND AN APPLIED TO GRADUATE SCHOOL MY FIRST TIME AS A SENIOR IN COLLEGE AND I DIDN'T GET IT AND WAS DEVASTATED BUT APPLIED TO DO THE PROGRAM FUNDED BY NINDS ACROSS THE NATION AND SO THERE ARE POST-BACS HERE AS THE NIH CAMPUS BUT ALSO AROUND THE UNITED STATES. SO I MENTIONED I DID A SHORT STINT AT THE UNIVERSITY OF CHICAGO AS WELL FOR RESEARCH. SO MY QUESTION I TOOK WITH ME FROM MY UNDERGRADUATE EDUCATION WAS HOW DO BACTERIA INTERACT WITH THEIR ENVIRONMENT. I WAS INTERESTED IN THAT AND WHEN I WENT AND DID MY POST-BAC LAUREATE RESEARCH I WENT TO THE LAB OF JUDY WONG WHERE I WAS ABLE TO STUDY A TYPE OF BACTERIA. IT'S COOL TO WORK WITH. YOU HAVE TO WORK WITH ANAEROBIC CHAMBERS TO KEEP OXYGEN AWAY. AND FROM THEIR LAB I HAD THE QUESTION OF HOW BACTERIA INTERACT WITH THEIR ENVIRONMENT. THE WALL LAB REALLY SOLIDIFY MY INTEREST FOR RESEARCH AND SO WITH THAT I APPLIED TO GRADUATE SCHOOL AND STAYED IN THE MIDWEST AS YOU CAN SEE FROM MY GRAPH AND WENT TO INDIANA UNIVERSITY. I DID MY DISSERTATION WORK IN THE LAB OF DR. KEARNS AND WAS NOT MY ORIGINAL LAB SO SOME TRAINEES MAY BE SAYING WHAT HAPPENED? I LEFT LAB AND I KNOW IT'S TABOO TO LEFT LAB BUT I'M HERE TO SAY IT DOES HAPPEN AND PROBABLY MORE COMMON THAN YOU KNOW. IN HIS LAB I WAS WORKING ON AN ANCESTRAL STRAIN AND YOU MAY WONDER WHAT IS THAT? I DON'T HAVE THE SLIDE, I'M SORRY, BUT THIS ORGANISM CAN TAKE UP DNA USUALLY INTEREST THE ENVIRONMENT BUT THE ANCESTRAL STRAIN WHICH I'M SHOWING HAS A LARGE PLASMID THAT PREVENTS IT FROM BEING ABLE TO TAKE UP DNA FROM THE ENVIRONMENT. SINCE I DID MY DISSERTATION WORK ON THE PLASMID I WAS ABLE TO FIND THE SIGMA FACTOR CAN CAUSE THE CELL TO DIE WHEN IT'S ACTIVATED. AND THEN I MOVED ALL THE WAY TO THE EAST COAST TO DO MY POST-DOCTORAL WORK IN THE LAB OF DR. STEWART. AND IN HER LAB I STUDIED A PROTEIN AND THEY MAY BE PART OF OTHER LARGER PROTEINS AND RESEARCH RECENTLY HAS BEEN SHOWING THEY'RE ASSOCIATED WITH AMINO ACIDS AND THERE'S 59 AMINO ACIDS AND AFFECTS HOW ATRB BEHAVES IN THE CELLS AND MAKES THE BACTERIA MORE RESISTANT TO OTHER ANTIBIOTICS. AND THE EUKARYOTIC CELLS CAN BE INVOLVED IN OTHER DISEASE. MY QUESTION IN THE LAB IS WHAT OTHER SMALL PROTEINS ARE PRESENT IN BACTERIA AND WHAT ROLE DO THEY PLAY IN THE CELL. SO THIS IS MY LAB I'M DOING MY RESEARCH IN BUT I DID WANT TO TOUCH ON BRIEFLY ABOUT MY MENTORS. I DIDN'T TALK ABOUT THE MENTORSHIP. IT WAS INSTRUMENTAL IN GETTING MY DEGREE. HE TRANSITIONED FROM THE LAB AND SUPPORTED ME AS A MINORITY STUDENT WHEN THERE WERE THINGS HAPPENING IN THE WORLD THAT AFFECTED BLACK STUDENTS. IF YOU ALL REMEMBER MANY BLACK PEOPLE WERE GETTING KILLED HE WOULD TAKE ME IN HIS OFFICE AND TALK TO ME ABOUT WHAT'S GOING ON IN THE WORLD AND SIT FOR AN HOUR AND TWO JUST TALKING AND HE SAID IF YOU NEED TO LEAVE, THAT'S FINE. IF YOU WANT TO STAY, THAT'S FINE. HE WAS SENSITIVE TO MY NEEDS AS A STUDENT BECAUSE IF I'M NOT OKAY, MY SCIENCE IS NOT GOING TO BE OKAY. AND THEN WITH DR. STEWART, SHE IS A CHAMPION FOR ALL OF HER STUDENTS. SHE WANTS US TO DO WELL AND THE SIX MONTHS I STARTED MY POSTDOC DR. STORZ ALLOWED KNOW EXPLORE THE DIFFERENT AREAS I COULD TAKE MY CAREER AND HAD THE UNIQUE OPPORTUNITY TO TEACH AT THE LOCAL COMMUNITY COLLEGE. SO DR. STORZ DIDN'T SHY AWAY FROM SAYING YES. SHE COULD HAVE SAID NO, FOCUS ON YOUR RESEARCH BUT SHE KNEW TEACHING WAS VERY IMPORTANT TO ME AND SHE WAS FLEXIBLE IN HER MENTORSHIP TO ALLOW ME TO TAKE THE OPPORTUNITY THAT WAS ALSO FURTHER MY OWN CAREER. THANK YOU ALL FOR LISTENING. >>THANK YOU SO MUCH FOR THAT DR. BURTON. OUR NEXT SPEAKER IS DR. SOUTIK GHOSAL. AN ASSISTANT PROFESSOR IN BIO STATISTICS AT THE UNIVERSITY OF VIRGINIA. HE IS APPLYING THE RESEARCH IN PEDIATRICS, OBSTETRICS AND GYNECOLOGY THAT WAS A FOCUS DURING HIS POST-DOCTORAL FELLOWSHIP IN THE BIO STATISTICS AND BIOINFORMATICS BRANCH IN THE DIVISION OF POPULATION HEALTH AT NICHD. HE RECEIVED HIS BACHELOR'S AND MASTER'S DEGREE IN STATISTICS IN INDIA AND BIO STATISTICS FROM THE UNIVERSITY OF LOUISVILLE. PLEASE WELCOME MY FORMER COLLEAGUE, DR. SOUTIK GHOSAL. >>THANK YOU SO MUCH. THANK YOU, EVERYONE. THANK YOU FOR BEING PRESENT VIRTUALLY TO CELEBRATE THE 60th ANNIVERSARY OF THE NICHD. I'M BEYOND DELIGHTED AND HONORED TO BE PART OF THE PANEL ALONG WITH THE WONDERFUL PANELISTS AND SHARE MY STORY WITH ALL OF YOU. AND A SPECIAL THANKS TO DR DR. GREWAL FOR MODERATING THE SESSION. I HAVE A BRIEF ROAD MAP OF THE LAST 30 YEARS OF MY CAREER WITH THE STOPS AT DIFFERENT BUILDINGS, IF YOU WILL. A LITTLE DISCLAIMER I DON'T HAVE A STRONG UNDERSTANDING RELATED TO THE DESIGNS OF THIS BUILDING SO PLEASE DONE GET CONFUSED BY THE STRANGE TITLE. I JUST HOPE TO SHARE SOME OF MY MEMORIES WITH TODAY WHICH HAPPENED AT ALL THESE DIFFERENT BUILDINGS AND SHAPED MY CAREER AND MY LIFE AND THE PRESENT THAT IS HAPPENING WITH ME RIGHT NOW. IN THE SINGLE PAGE YOU CAN SEE THE ROLES I'VE TAKEN IN THE DIFFERENT PHASES OF MY LIFE AND MORE IMPORTANTLY I HOPE YOU CAN CLEARLY SEE ALL THE IMAGES OF THE INSTITUTIONS I'VE BEEN AT IN THE SINGLE SLIDE WHICH WAS MY INTENTION AND NOT LACK OF PRESENTATION SKILLS, I ASSURE YOU. I PUT UP THE IMAGES OF THE BUILDINGS WITH THE HOPE AT LEAST SOME OF YOU CAN IDENTIFY ONE BUILDING IN THIS SLIDE WHICH IS THE THIRD AND FOURTH BUILDING AND YES I'M TALKING ABOUT THE NICHD BUILDING AT 6710B ROCKVILLE DRIVE AND IT'S BEEN A COMMON FACTOR AMONG US AND I OWE A LOT TO THIS BUILDING. I MET THE PEOPLE IN IT AND I HOPE YOU UNDERSTAND THE SYMBOLISM. I'M CURRENTLY ASSISTANT PROFESSOR IN THE PUBLIC HEALTH SCIENCES DEPARTMENT AT THE UNIVERSITY OF VIRGINIA. I HAVE A BACKGROUND IN BIO STATISTICS AND AT THE CURRENT PHASE OF MY CAREER I THINK HOW GRATEFUL I AM TO ALL THE PEOPLE WHO I HAVE MET IN ALL THE BUILDINGS AND HOW ALL TOOK A PART IN SHAPING MY CAREER. STRANGELY, I DON'T KNOW WHERE I WOULD HAVE BEEN WITHOUT THEM BUT LET'S KEEP THAT OTHER SIDE FOR A DIFFERENT OCCASION. THE PHASES OF MY LIFE THAT I'VE LISTED HERE AND ALSO THE ONES I COULDN'T FIT HERE HAVE VALUABLE LESSONS WHICH I WANT TO SHARE WITH YOU. SO MY VERY FIRST INTRODUCTION TO STATISTICS WAS VERY STRANGE. WHICH HAPPENED DURING MY HIGH SCHOOL AT INDIA AND MY SCHOOL WE HAD TO TAKE AN ELECTED COURSE AS PART OF OUR CRICK COLUMN AND THE MOST POPULAR COURSES WERE BIOLOGY AND COMPUTER SCIENCES, WHICH MOST THE STUDENTS, MY FRIENDS TOOK. A LOT OF US WERE NOT VERY FOND OF BIOLOGY AT THAT POINT IN TIME. POSSIBLY MAYBE WE DIDN'T LIKE THE WAY IT WAS TAUGHT BUT WHAT WE WANTED AS AN ELECTIVE IS SOMETHING WE DON'T HAVE TO STUDY A LOT. SO ONE OF MY FRIENDS MENTIONED STATISTICS WHICH A NEW SUBJECT TO US WAS OFFERED AND POSSIBLY COULD BE AN EASY ALTERNATIVE TO PICK UP BECAUSE IT MAY BE NOT A LOT OF WORK A TYPICAL TEENAGER MENTALITY THAT THE POINT IN TIME. WE DECIDED TO TAKE THAT AND FOR SEVERAL WEEKS THERE WERE MATHEMATICS AND I'M PRETTY SURE WHERE WE TOOK STATISTICS AND ANY COURSE OF STATISTICS WILL KNOW AT FIRST THEY TALK ABOUT DATA, TYPES OF DATA, HISTOGRAMS AND STUFF LIKE THAT. SO THAT WAS NOT A PROBLEM BUT THE PROBLEM WAS THE STRESS THAT WE HAD TO TAKE TO ILLUSTRATE TO OTHERS WHAT IS STATISTICS AND WHAT DO WE DO IN CLASS. DO WE GO OUT AND COLLECT DATA? WHAT'S HAPPENING IN THE CLASS? AND IT WAS QUITE CHALLENGING AT FIRST NEVERTHELESS I LIKED IT AND DECIDED TO CONTINUE WITH THAT AS MY MAJOR IN COLLEGE, EVEN NOW MANY OF MY DEAREST FRIENDS JOKE AROUND AND SAY I MAKE GRAPHS WITH SOFTWARE FOR A LIVING BUT JOKES ASIDE, THAT TASK OF TALKING ABOUT MY WORK HAD BEEN A LESSON I HAD TO ADAPT AND I WORK WITH PEOPLE OF VARIOUS BACKGROUNDS AND THE TASK OF ILLUSTRATING THE FINDINGS IN A WAY MY COLLABORATOR CAN UNDERSTAND IS SOMETHING I GOT TO PRACTICE FOR A LONG TIME. THE BIGGEST CHANGE IN DIRECTION OF MY CAREER WAS WHEN I DECIDED TO GIVE RESEARCH A GO. DURING MY UNDERGRADUATE STUDIES OR UNTIL THE END OF MY MASTER'S I HAD NO INTENTION OF TAKING THE Ph.D. OUT. THAT THE POINT IN TIME JOBS BASED ON ANALYTICS ESPECIALLY IN THE BANKING OR ANY OTHER BUSINESS DOMAIN WERE BOOMING IN INDIA AND MANY PEOPLE WITH DIFFERENT BACKGROUNDS WERE ENROLLING TO LEARN ABOUT STATISTICAL MODELS TO LAND ONE OF THOSE ANALYTICS JOBS. I REMEMBER I WAS GOING ON BOASTING ALONG THE CORRIDORS OF THE SECOND BUILDING IN THE SLIDE AMONG MY FRIENDS BOASTING ABOUT MY MAJOR AND BACKGROUND AND SAY IT MAY OR MAY NOT BE ROCKET SCIENCE BUT WE'RE NOT ONLY MAKING GRAPHS. THOUGH THAT WAS ONE OF THE IMPORTANT ASPECTS FOR A JOB. MOST MY PEERS WERE TAKING THE JOBS AND I WAS ALSO PLANNING TO DO THE SAME TO BE HONEST. IT WAS WHEN BIO STATISTICS COURSE WAS OFFERED DURING MY MASTER'S BY POSSIBLY ONE OF THE BEST TEACHERS I EVER HAD AND THAT CHANGED MY PERSPECTIVE. PREVIOUS TO MY EXPERIENCE WITH STATISTICS WAS MOSTLY ASSOCIATED WITH MATHEMATICS AND DEVELOPING STRONG BACKGROUND STATISTICAL MODELS A MATHEMATIC FLAVOR OF THE MODEL AND PROOFS ETCETERA. POSSIBLY THAT THE FIRST TIME EVER ASSOCIATED WITH THE REALITY AND COULD UNDERSTAND HOW I COULD USE MY KNOWLEDGE TO BE A PART OF CHANGING SOCIETY OR SOMETHING OF THAT SORT. I LEARNED AND REALIZED HOW TO USE MY KNOWLEDGE TO UNDERSTAND PREDICT AND POSSIBLY CURE DISEASES WHICH WAS FASCINATING AT THAT MOMENT AND I TOOK AN Ph.D. IN OCTOBER 2013 WHICH FINA FINALLY BROUGHT ME TO THE U.S. AND MY PARENTS WERE SHOCKED AND NOT SURE THAT WAS THE RIGHT PATH FOR ME BECAUSE THE DECISION WAS TAKEN IN A SHORT SPAN OF TIME. THEN CAME THE RESEARCH PHASE OF MY LIFE AND THERE WERE LOTS OF UPS AND DOWNS AS WELL. WHEN I STARTED MY Ph.D. I HAD HOPED TO WORK IN CANCER RESEARCH. IT WAS MY ADVISER AND MY DEPARTMENT CHAIR FROM THE UNIVERSITY OF LOUISVILLE WHO SUGGESTED AND REQUESTED IF I'M INTERESTED TO WORK AS A RESEARCH ASSISTANT IN THE DEPARTMENT OF PEDIATRICS. TO BE HONEST I WAS SKEPTICAL AND THINKING I WAS MOVING -- LIKE THIS IS NOT ALIGNED TO MY GOAL. LATER I THOUGHT I'D GIVE IT A TRY AND ONCE I AGREED AND STARTED WORKING WITH THEM AS PART OF THE TEAM, WHAT HAPPENED WAS MEDICAL DOCTORS WERE POURING IN ON A DAILY BASIS WITH LOADS OF RESEARCH QUESTIONS AND THAT'S THE FIRST TIME I TOOK PART IN INTERDISCIPLINARY COLLABORATIVE WORK. IT WAS A NEW EXPERIENCE FOR ME AS I GOT TO KNOW SOME OF THE AREAS AND SOME OF THE EVERYDAY PROBLEMS THE DOCTORS ARE GAUGED IN. UNDOUBTEDLY IT WAS OVERWHELMING AT FIRST. IT WAS EXTREMELY FASCINATING AS WELL. AND I FEEL THE EXPOSURE HELP ME IN MY POST-DOCTORAL POSITION AT NICHD AND THE EXPERIENCE CAME IN HANDY IN THE ROLE I'M IN NOW. MY POST-DOCTORAL RESEARCH EXPERIENCE AT NICHD WAS EVEN MORE FASCINATING COMPARED TO MY DOCTORAL RESEARCH. I HEARD SO MANY GOOD THINGS BEFORE JOINING NICHD SPECIFICALLY FROM ONE OF THE SENIORS AT THE UNIVERSITY OF LOUISVILLE WHO JOINED HITCHED BEFORE ME AND HAD AN AMAZING EXPERIENCE. FOR ME IT WAS CHALLENGING AND SLIGHTLY DIFFERENT AT FIRST BECAUSE I HAD TO PICK A NEW RESEARCH AREA RELATED TO THE DIAGNOSIS OF DISEASES AND OUTCOMES TO BIOMARKERS. IT WAS VERY DIFFERENT FROM THE RESEARCH I DID DURING MY PH.D. LITTLE DID I KNOW ABOUT THE FIRST APPLICATION OF THE AREA BUT GRADUALLY I GOT TO UNDERSTAND THE POTENTIAL AS IT WAS RELATED TO NOVEL COVID AND TO THE SCOPE TO EFFICIENTLY DIAGNOSE THEM AND I CANNOT THANK ENOUGH MY POST-DOCTORAL FELLOW FOR CONSIDERING ME FOR THIS AREA. I RECALL GOING FOR A FEW WALKS WITH HIM AROUND THE POND IN FRONT OF THE 6710B WHEN WE WERE DISCUSSING MY POTENTIAL DIRECTION AND PIT FALLS AND I CAN'T IMAGINE HOW HELPFUL THEY'VE BEEN AS THEY HELPED SHAPE MY INTEREST. I WAS AT NICHD FOR MORE THAN THREE YEARS AND DUE TO COVID WAS ONLY THE ABLE TO BE PHYSICALLY PRESENT LESS THAN HALF A MONTH AT MY TIME AT NICHD BUT DURING MY STAY AT NICHD I LEARNED A LOT. I MADE A LOT OF MEMORIES AND I HAD CONSTANT SUPPORT FROM ALL THE INVESTIGATORS ACROSS ALL THE BRANCHES. I FEEL SO HAPPY TO THINK I SAID YES TO SO MANY CHALLENGES ON DIFFERENT OCCASIONS. ALL THOSE CHOICES CUMULATIVELY PUT ME IN MY ROLE AT UVA WHERE I GOT TO COLLABORATE WITH DOCTORS ON THEIR RESEARCH WHICH BLOWS MY MIND. I GET TO LEARN ABOUT RIVETING DIRECTIONS MEDICAL SCIENCE IS TAKING ON A DAILY BASIS AND FEEL FORTUNATE TO BE PART OF THE PROGRESS THE TEAMS ARE MAKING. I GET TO MEET WITH NEXT GENERATION OF RESEARCHERS AND DOCTORS AND SHARE MY KNOWLEDGE WITH THEM. I COULDN'T THINK OF A WAY TO HIGHLIGHT THE FAILURES DURING THE JOURNEY SO FAR. IF I DID THE SLIDE WOULD HAVE BEEN FILLED UP BUT OF COURSE IT WAS NOT ALL GLORY DURING THE JOURNEY. IT'S NEVER LIKE THAT THERE WERE A LOT OF FAILURES, A LOT MORE THAN I HAD EVER HOPED BUT FACED REJECTION FROM JOURNALS AND NOT ALWAYS SUCCESS IN DIFFERENT RESEARCH ENDEAVORS AND NOW I FEEL DIFFERENT CORNERS OF THESE BUILDING SHARE TRIUMPHS AND FAILURES WITH ME BUT WHAT WAS MOST IMPORTANT WAS MY MENTORS AND AT ALL CORNERS WITH ME AND HELPED ME LEARN TO HANDLE THE FAILURES AND TO ACCEPT THEM AS PARTS OF MY LIFE. THEY ASSURED ME THIS HAPPENED TO EVERYONE EVEN THE BEST ONES AND HAVE FACED WORSE. I'M SURE THEY WERE EXAGGERATING A LOT IT WAS COMFORTING TO HEAR. I THINK THE MOST IMPORTANT WAS HOW TO HANDLE FAILURES AND MORE IMPORTANTLY HOW TO LEARN FROM THEM. WHAT I'M TRYING TO SAY IS THERE'LL BE SURPRISES AT EVERY CORNER. OFTEN MANY OF THOSE SURPRISES WILL NOT BE THE GOOD ONES BUT EITHER WAY TLA THERE WILL ALWAYS BE PEOPLE AROUND WITH MORE EXPERIENCES AND WAY MORE EXPERIENCES THAN YOU SO YOU CAN LEARN FROM THEM AND HANDLE THE FAILURES AND MOVE ON WITH YOUR LIFE. OF COUR THERE'S LOTS OF LESSONS WE GET TO LEARN ON THE JOB WHICH ARE HARDLY EVER TAUGHT IN THE SCHOOLS AS PART OF OUR CURRICULUM. MANY ARE LIKE ORGANIZE SKILLS AND TIME MANAGEMENT, DISCIPLINE, PERSEVERANCE AND I CAN GO ON AND ON. WE ALL GET TO LEARN THAT THROUGHOUT OUR LIFE WITH OUR PEERS AND WE CAN TRY TO ADAPT IN OUR LIVES AS WELL. WHAT I REALIZED WE HAVE SO MUCH TO LEARN FROM AND I GET INSPIRED FROM EVERYONE AND A BELIEVE THERE'S SO MUCH FOR ME TO LEARN, ADAPT AND APPLY. I REALLY WISH THERE WAS A FORMULA TO BE MORE PRODUCTIVE. I WISH I HAD SOMETHING I COULD SHARE WITH ALL OF YOU THAT ARE UNIQUE, DIFFERENT AND EFFECTIVE BUT AT THIS MOMENT I HAVE TO LEARN SO MUCH MORE AND WHAT I HAVE RIGHT NOW ARE THE BUILDINGS FULL OF MEMORIES. ALL OF YOU, ESPECIALLY THE POSTDOCS, PRE DOCS, POST-BACS, I WISH YOU WELL IN YOUR FUTURE, HOPEFULLY YOU'LL GATHER A LOT OF MEMORIES LIKE I DID. HOPEFULLY WE'LL MEET IN THE FUTURE IN PERSON ON SOME OTHER OCCASION IN ANOTHER MOMENT. I CAN THANK ALL MY PEERS AND FELLOW INVESTIGATORS AND MANY THANKS TO ALL OF YOU. THANK YOU. >>THANK YOU FOR SHARING YOUR FASCINATING JOURNEY WITH US. NEXT WE'LL HAVE THE PLEASURE OF HEARING FROM DR. SONYA TANG GIRDWOOD. SHE IS CURRENTLY AN ASSISTANT PROFESSOR IN THE DIVISION OF HOSPITAL MEDICINE AND CLINICAL PHARMACOLOGY AT CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER. IN HER FIRST YEAR ON THE FACULTY, SHE RECEIVED A K12 NICHD CAREER DEVELOPMENT AWARD TO STUDY THE RELATIONSHIP BETWEEN THE DEVELOPMENT OF ACUTE KIDNEY INJURY USING NOVEL BIOMARKERS. SHE RECEIVED HER M.D. AND Ph.D. AT JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE AND COMPLETED HER CHIEF RESIDENCY AT THE SAME HOSPITAL WHERE SHE IS NOW BASED. AFTER RESIDENCY SHE STAYED IN CINCINNATI FOR HER FELLOWSHIP AND T32 NICHD PEDIATRIC CLINICAL PHARMACOLOGY FELLOWSHIP. WELCOME DR. TANG GIRDWOOD. >>THANK YOU TO DR. BIANCHI AND NICHD FOR GIVING ME THIS OPPORTUNITY TO BE ON THIS WONDERFUL PANEL. AS DR. GREWAL SAID I'M AN ASSISTANT PROFESSOR AT CINCINNATI CHILDREN'S HOME AND A PHYSICIAN AND RESEARCHER PRIMARILY STUDYING ANTIBIOTICS IN CRITICALLY ILL CHILDREN. YOU'LL SEE MY TWITTER CON INFO ON THE SLIDE AND FEEL FREE TO CONTACT ME THROUGH TWITTER. I WANT TO TALK ABOUT MY CAREER PATH IN HIGH SCHOOL I THOUGHT I WANTED TO BE A MEDICAL DOCTOR. I'D APPLIED TO THE PROGRAMS AND FORTUNATE TO NOT HAVE BEEN ACCEPTED BECAUSE I DON'T THINK I WANTED TO GO INTO MEDICINE FOR THE RIGHT REASONS AT THAT TIME. INSTEAD I WENT TO M.I.T. WHERE THE MAJORITY OF STUDENTS PURSUE RESEARCH AND GIVEN FUNDING TO DO SO. I MOVED IN A BIO AND ORGANIC CHEMISTRY LAB AND THOUGHT I'D APPLY TO GRAD SCHOOL FOR A PH.D. FORTUNATELY TOWARDS THE END OF MY JUNIOR YEAR I LEARNED ABOUT THE MD Ph.D. PROGRAM AND I REALIZED I WANTED MY RESEARCH TO MAKE A DIRECT IMPACT ON PEOPLE AND FOR ME IT WAS IMPORTANT TO HAVE MEDICAL TRAINING SO MY CARE COULD INFORM MY RESEARCH QUESTIONS. I WENT TO JOHNS HOPKINS SCHOOL OF MEDICINE AND OBTAINED MY Ph.D. IN BASIC SCIENCE PHARMACOLOGY. I LOVE PHARMACOLOGY. IT COMBINES MY INTERESTS IN CHEMISTRY AND BIOLOGY AND I LEARNED A LOT DURING MY BASIC SCIENCE RESEARCH AND I ALSO REALIZED UNDER MY UNDERSTAND THAT MAYBE BASIC SCIENCE WAS QUITE MY PASSION. BUT I WAS VERY UNFORTUNATE THAT I DID LEARN ABOUT CLINICAL PHARMACOLOGY WHICH IS A TRANSLATIONAL RESEARCH DISCIPLINE AND THOUGHT PERHAPS THAT COULD BE A POTENTIAL RESEARCH AREA FOR ME IN THE FUTURE BUT BY THE TIME I GRADUATED MEDICAL SCHOOL I STILL HADN'T HAD ANY EXPERIENCE WITH CLINICAL PHARMACOLOGY. I WENT ON TO CINCINNATI CHILDREN'S MEDICAL CENTER AND I DID A FULL THREE YEARS OF CLINICAL TIME. THIS MEANS I DIDN'T DO ANY OF THE ACCELERATED OR INTEGRATIVE RESEARCH PATHS, I DIDN'T KNOW WHAT I WANTED TO SPECIALIZE IN AND UNFORTUNATELY I DID HAVE OPPORTUNITY TO ENGAGE IN CLINICAL PHARMACOLOGY RESEARCH AND ABLE TO STUDY DIFFERENT DRUGS IN CLINICALLY ILL CHILDREN AND SEEING MY RESEARCH HAVE AN IMPACT AND I DECIDED I WOULD DO A CLINICAL PHARMACOLOGY FELLOWSHIP WITH A CLINICAL FELLOWSHIP. BEFORE GOING ON TO THE FELLOWSHIP I A YEAR OF CHIEF RESIDENCY WHICH IS NOT A TYPICAL PATH. I CHOSE TO DO THE CHIEF RESIDENCY BECAUSE I WANTED TO DEVELOP MY SKILLS IN TEACHING LEARNERS AND LEARN ABOUT THE ADMINISTRATION AND OPERATIONS OF A HOSPITAL. I WAS FORTUNATE IN THAT YEAR OF CHIEF RESIDENCY I WAS EXPOSED TO MANY TYPES OF RESEARCH INCLUDING QUALITY IMPROVEMENT, MEDICAL EDUCATION AND CLINICAL RESEARCH ALL OF WHICH I HAD NEVER EXPERIENCED BEFORE AND IT ALLOWED ME TO BE A WELL-ROUNDED REASONER TO WORK IN DIFFERENT DISCIPLINES. I THOSE MY FELLOWSHIP TO BE IN MEDICINE WHERE WE TAKE CARE OF CHILDREN WITH PEDIATRIC ISSUES AND ALSO WITH HIGH MEDICAL COMPLEXITY WHO HAVE INVOLVEMENT ON MULTIPLE DISCIPLINES AND SPECIAL AND I COMBINED MY FELLOWSHIP WITH ANOTHER FELLOWSHIP THROUGH A T32 PROGRAM AND FOUND THE FOUNDATION IN MY RESEARCH PROGRAM IN PHARMACO DYNAMICS IN CRITICALLY ILL CHILDREN. I WAS ABLE TO STAY ON FOR A FACULTY AND MY FIRST TWO YEARS WERE FUNDED BY AN NICHD K-12 DEVELOPMENT AWARD TO BEGIN BUILDING MY PROGRAM. AND I'M PROUD TO SAY I TRANSITIONED FROM A K TO AN R AND FUNDED THROUGH THE R35. I SHOW YOU THIS TIME LINE SO YOU KNOW MY CREDENTIALS OR WHERE I TRAIN BUT TO SEE THE AMOUNT OF TIME IT TOOK FOR ME BETWEEN KNOWING THAT I WANTED TO SUR SUE KIENTS AND MED SIP -- OF AND DURING THE 20 YEARS I CONSTANTLY QUESTION WHAT I WANTED TO DO WITH ANY CAREER AS YOU HEARD, TRYING OUT DIFFERENT PATHS AND ULTIMATELY REFINING MY CAREER MISSION. ONE OF THE MAIN TAKEAWAYS FROM THE TALK IS WHEREVER YOU ARE IN TRAINING, FINDING YOUR CAREER PATH STARTS NOW BY FIGURING OUT YOUR MISSION STATEMENT. FOR ME, WHEN I STARTED FELLOWSHIP I KNEW I WANTED RESEARCH TO BE PART OF MY CLEAR. I JUST HAD NO IDEA HOW MUCH. I HAD DONE 100% RESEARCH TIME AND DID CLINICAL TIME DURING MY RESIDENCY. THE FELLOWSHIP WAS A TIME FOR KNOW FIGURE OUT IF I LIKED THE 75% RESEARCH, 25% CLINICAL SMITH WHETHER I LIKED GRANT WRITING OR DINING AND STUDYING AND MY MISSION STATEMENT INVOLVED OVER MY TIME DURING MY FELLOWSHIP TIME AND AS I CHANGED MY CAREER. SO WHEN I FIRST STARTED FELLOWSHIP, MY MISSION STATEMENT WAS PRETTY SAYING SAYING I WANTED TO BE A PEDIATRIC HOSPITALIST AND EDUCATOR AND LOVED TEACHING AND WANTED TO BE AN NIH FUNDED RESEARCH IN A PEDIATRIC PHARMACOLOGY FIELD. I SHARED THING WITH MENTORS IN WHAT I MEND IN LOVED TEACHING AND WHETHER I WANTED TO PURSUE MED ED RESEARCH AND I SAID PROBABLY NOT AND KEEP THE REFINING MY MISSION STATEMENT AND I WANTED TO BE AN AM I WANTED TO PROVIDE PERSONALIZED MODELS OF THERAPEUTIC HOSPITALIZED CHILDREN. I USE THIS LONGER MISSION STATEMENT TO WRITE MY RESEARCH MISSION WHICH I SHARE DURING MY SEARCH OF FACULTY POSITION SAYING I WANTED TO OPTIMIZE THE DELIVERY OF SAFE AND EFFECTIVE MEDICATION TO IMPROVE CLINICAL OUTCOMES. I TRULY BELIEVE BY HAVING THIS MISSION STATEMENT I SHARED WITH OTHERS LED ME TO BE ABLE TO FIND MY IDEAL FACULTY CHILDREN AT CINCINNATI CHILDREN. SO MY ADVICE TO LEARNERS AND TRAINEES ARE TO WRITE OUT OUR MISSION STATEMENT AND SHARE IT WITH MENTORS, PEER MENTOR AND FRIENDS AND FAMILIES AND REFINE IT AS YOU GET MORE CLARITY ABOUT WHAT YOU WANT. I WOULD BE HIGHLY NEGLECT IF I DIDN'T ACKNOWLEDGE IT TOOK A VILLAGE TO GET ME TO WHERE I AM NOW. I DIDN'T FIGURE OUT MY MISSION STATEMENT OR CAREER PATH ON MY OWN. SO I WANT TO SHARE WITH YOU THE TYPES OF MENTORS IN MY LIFE THAT HELP ME GET ON THE SPEAR. FOR ALL OF US IN RESEARCH WE KNOW WE NEED RESEARCH MENTORS IN THE AREA OF STUDY WE WANT TO PURSUE. FOR ME, DR. TERI SHAPIRO WAS INSTRUMENTAL IN HELPING ME FALL IN LOVE WITH KARM PHARMACOLOGY AND INTRODUCED ME TO CLINICALS PHARMACOLOGY. DR. SHAPIRO HELPS ME STUDY MEDICATIONS IN CRITICALLY IL CHILDREN. DR. DONG AND MIZUNO TEACH ABOUT METRICS AND AS MY RESEARCH HAS CONTINUED TO GROW AND I'VE EXPANDED TO THE FIELD OF KIDNEY INJURY THEY'VE BEEN CONTACT MENTORS IN THIS AREA. IT WASN'T UNTIL FELLOWSHIP I REALIZED I NEEDED MORE THAN JUST SCHOLARLY CONTENT MACHINE BUT CAREER MENTORS AND CAREER SPONSORS. FORECASTLY, PART OF FELLOWSHIP WE ALSO AN FELLOWSHIP OVERSIGHT COMMITTEE WHICH HAS DEVELOPED IN THE CAREER DEVELOPMENT. DR. SHAH AND BRADY HELP WITH PRECIPITATION OUTSIDE THE DIVISION AND I HAD A FEMALE PHYSICIAN SCIENTIST WHO WAS A FULL PROFESSOR WHO DOES CLINICAL AND TRANSLATIONAL RESEARCH AND A ROLE MODEL I COULD LOOK UP TOE. I HAVE REPRESENTATION OUT SIDE OF MY INSTITUTION. DR. DRIEST IS A PHARMACOLOGIST AT VANDERBILT WHO CAN GIVE ADVICE ON RESEARCH AND THIS GROUP OF INDIVIDUALS HELPED PROVIDE DIFFERENT PERSPECTIVES AND HELPED ME WHEN I NEEDED TO MAKE DIFFICULT DECISIONS WRONG MY CAREER PATH. FOR EXAMPLE, WHETHER I SHOULD TAKE ON A CERTAIN LEADERSHIP POSITION. I THINK IT'S ALSO IMPORTANT TO HAVE LIFE MENTORS AND ROLE MODELS WHO ARE PEOPLE YOU AS SPIRE TO BE IN ACADEMEA OR LIFE >>THAT'S IMPORTANT TO HAVE A FAMILY THAT IS SUPPORTIVE AND UNDERSTAN UNDERSTANDING SUCH AS WHEN A GRANT IS DUE AND TO GROUND YOU AND REMIND YOU THERE'S LIFE OUTSIDE OF WORK. WORK ON YOUR MISSION STATEMENT AND USE THAT AS YOUR CAMPUS TO GUIDE YOUR WAY FORWARD AND BUILD A NETWORK OF MENTORS NOT JUST IN YOUR CONTENT AREA BUT HAVING PEOPLE SHOW YOU DIFFERENT CAREER PATHS. THANK YOU. >>THANK YOU FOR YOUR PATIENCE WITH THE TECHNICAL GLITCHES ALONG THE WAY. OUR FINAL SPEAKER THIS AFTERNOON IS DR. CRYSTAL ROGERS. DR. ROGERS IS CURRENTLY AN ASSIST AND THE PROFESSOR IN THE DEPARTMENT OF ANATOMY, PHYSIOLOGY AND CELL BIOLOGY AT THE U.C. DAVIS SCHOOL OF V VETERINARY MEDICINE AND WAS AT THE CALIFORNIA STATE UNIVERSITY NORTHRIDGE WHERE SHE CREATED A THRIVING UNDERGRADUATE RESEARCH PROGRAM IN DEVELOPMENTAL BIOLOGY. DR. ROGERS OBTAINED A BACHELOR OF SCIENCE FROM UCLA AND Ph.D. IN DEVELOPMENT BIOLOGY FROM GEORGETOWN UNIVERSITY. SHE DID HER POST-DOCTORAL TRAINING AT THE CALIFORNIA INSTITUTE OF TECHNOLOGY. DR. ROGERS, WELCOME AND THANK YOU FOR BEING HERE. >>THANK YOU SO MUCH FOR HAVING ME. THAT WAS A PHENOMENAL INTRODUCTION AND NOW I DON'T FEEL I NEED TO SHOW ANY OF MY SLIDES BUT I'LL SHOW THEM ANYWAY BECAUSE THERE'S FUN PICTURES. THANK YOU TO DR. BIANCHI FOR PLANNING THIS AND FOR GIVING THE ME OPPORTUNITY TO TALK ABOUT MY JOURNEY. I STOLE THE TITLE AS SOMEONE SUGGESTED I SHOULD USE THE TITLE AND I THOUGHT IT WAS A PHENOMENAL. I'M CRYSTAL ROGERS AND I'LL TELL YOU ABOUT A CRYSTAL CLEAR VIEW OF MY DEVELOPMENT OF BIOLOGY. I'M ORIGINALLY FROM A TOWN IN CALIFORNIA CALLED SANTA ROSA AND GROWING UP I THOUGHT IT WAS A SMALL TOWN BUT I WAS CORRECTED AS A TRAVELED ACROSS THE U.S. AND REALIZED IT'S A MODERATELY SIZED CITY. THIS IS ONE OF THE HUBS IN NORTHERN CALIFORNIA WINE COUNTRY AND SANTA ROSA IS A BEAUTIFUL TOWN BUT FOR THE MOST PART MOST OF THE PEOPLE I KNEW THAT WERE IN MY CIRCLE HAD NEVER BEEN TO COLLEGE AND THERE ARE WORKING-CLASS FAMILIES SURVIVING. MY MOTHER WORKED AT THE UNITED STATES POST OFFICE AND DID NOT ATTEND COLLEGE AND MY DAD DID NOT GROW UP FROM COLLEGE AND GREW UP IN A SINGLE PARENT HOUSEHOLD WITH THE IDEA THAT WORKING HARD IS IMPORTANT AND YOU WORK HARD TO GET WHAT YOU NEED AND WORKING IS ALL YOU DID AND YOU DID IT BECAUSE YOU HAD TO UNTIL YOU DIED WHICH IS A LITTLE BIT OF A BUMMER. AND I DIDN'T KNOW ANYBODY WITH A WHITE COLLAR JOB WHERE IT'S A CAREER AND YOU CHOSE THE PATH. EVERYONE I KNEW WAS WORKING THEMSELVES TO THE BONE TO ADVISER. I DIDN'T HAVE A LOT OF GUIDANCE ON MY JOURNEY. I DID WELL IN HIGH SCHOOL AND GOT STRAIGHT As AND LOVED SCHOOL AND LOVED THE STRUCTURE OF SCHOOL BECAUSE I WAS COMING FROM A HOME IN DISARRAY, WE'LL SAY. AND SO WHEN I APPLIED TO COLLEGES AN APPLIED TO THREE UNIVERSITIES BECAUSE THAT WAS ALL THAT I KNEW. I THOUGHT THAT'S WHAT YOU DID. UNIVERSITY OF CALIFORNIA SAN DIEGO AND BERKELEY UNIVERSITY AND UCLA AND I GOT INTO ALL THREE AND I WAS EXCITED. NOT KNOWING ANYTHING ABOUT COLLEGE RANKINGS OR TOWNS BECAUSE I HAD NOT BEEN OUT OF SANTA ROSA I CHOSE UCLA BECAUSE AT THE TIME THEY HAD THIS AMAZING BASKETBALL TEAM IN THE '90s. THEY WERE PHENOMENAL THE BANDON BROTHERS AND I WAS A BASKETBALL PLAYER IN HIGH SCHOOL AND I WAS ENAMORED WITH THIS TEAM AND KNEW IT WAS A GOOD SCHOOL SO I WENT THERE AND I GOT THERE WITHOUT THE IDEA OF HAVING ANY IDEA WHAT I WAS DOING. I DIDN'T HAVE A TON OF GUIDANCE AND MY MOM WANTED THE BEST FOR ME AND WHAT I WAS TAKING WITH ME WAS GRIT AND STUBBORNNESS AND DETERMINATION AND AMBITION. WHEN I GOT TO UCLA IT WAS A SHOCK, A CULTURE SHOCK. LOS ANGELES WAS VERY DIFFERENT FROM NORTHERN CALIFORNIA AND [NO AUDIO] AND IT TURNS OUT I DIDN'T KNOW HOW TO LEARN. I DIDN'T KNOW HOW TO STUDY. I DIDN'T KNOW HOW TO COMPETE AT THE COLLEGE LEVEL ACADEMICALLY. AND MY MAJOR WAS ORGANISMAL BIOLOGY AND I LOVED SCIENCE GROWING UP AND AT THE TIME I THOUGHT IF YOU LOVE SCIENCE YOU BECOME A MEDICAL DOCTOR SO I WAS ORIGINALLY PRE MED AT UCLA BUT IT TURNS OUT I LIKED ANIMAL BEHAVIOR AND ECOLOGY AND EVOLUTION CLASSES AND THOSE ARE THE CLASSES IN WHICH I THRIVED AND THOSE DON'T PREP YOU FOR MEDICAL SCHOOL AND I WAS IN SCHOOL WITH STUDENTS THAT WERE PRE MED AND THEY WERE PRETTY MISERABLE. THEY WERE KILLING THEMSELVES FOR THE GRADES AND ALL THEY DID WAS STUDY AND KNOWN OF THAT WAS ANYTHING THAT SOUNDED LIKE MY PATH. SO I STARTED FOCUSSING ON ECOLOGY, EVOLUTION AND BIOLOGY AND ENJOYED THE CLASSES AND I HAD A GPA NOT COMPETITIVE FOR VOLUNTEER SPOTS IN LABS AND DIDN'T DO RESEARCH AS AN NEW JERSEY OF UNDERGRADUATE AND TO VOLUNTEER IN A LAB THEY EXPECTED A 3.5 OR ABOVE AND IN ADDITION I DIDN'T HAVE ABILITY TO VOLUNTEER. I NEEDED MONEY. I NEEDED A JOB. I WORKED TWO PART-TIME JOBS. I WORKED AS A CLERICAL ASSISTANT FOR A NEUROSURGEON FOR THE MEDICAL CENTER AND WORKED AS A VET TECH FOR A VETERINARIAN AND THAT WAS THE POINT AT WHICH I THOUGHT MAYBE I'LL BECOME A VETERINARIAN. IT'S COOL AND IT'S CLINICAL AND LOVED ANIMALS BUT I WAS INFORMED MY 3.0 WOULDN'T GET IT SO I HAD TO RETHINK MY PATH AND DIDN'T KNOW WHAT I WANTED TO DO. I WAS IN COLLEGE AND I WAS ENJOYING MY TIME. YOU SEE THE PICTURE OF ME BEING YOUNG AND HAVING FUN IN MY TINY KID SIZED UCLA T-SHIRT, GO FIGURE, I DIDN'T HAVE A FOCUS. I GRADUATED AND I DID OKAY AND I STILL LOVED BIOLOGY BUT I DIDN'T KNOW WHAT TO DO AFTER THAT SO WHEN I GRADUATED WHAT I DECIDED TO DO WAS GET A JOB. I WORKED FOR THE SAME NEUROSURGEON BUT NOW HE WAS AT CEDAR SINAI AND I DIDN'T FEEL MY CAREER WAS TAKING ME ANYWHERE BECAUSE I WAS BASICALLY AN ADMINISTRATIVE ASSISTANT AND/OR PERSONAL ASSISTANT AND WHAT DID YOU DO IF YOU'RE NOT IN SCIENCE AND SINCE I DIDN'T HAVE ANYBODY TO GUIDE ME I FLOATED AND HOPED SOMETHING WOULD HELP ME MAKE A DECISION AND THIS WAS THE POINT AT WHICH I DECIDED I WOULD APPLY TO GRADUATE SCHOOL. AT THE TIME I DIDN'T KNOW THE DIFFERENCE BETWEEN A MASTER'S DEGREE OR A Ph.D. AND I WASN'T -- I THINK I DIDN'T WANT TO ADMIT THESE THINGS SO I DIDN'T ASK ANYBODY AND APPLIED TO THREE GRADUATE SCHOOL, U.C. SAN DIEGO AND UCLA AND THEY WEREN'T INTERESTED IN MY ME WHICH IS THEIR LOSS IN MY PERSONAL OPINION AND GOT AN INTERVIEW AT GEORGETOWN UNIVERSITY AND I GOT IN AND IT WAS AMAZING BECAUSE LOOKING BACK ON MY APPLICATION AND PROFILE I DON'T KNOW IF I COULD COMPETE FOR A SPOT TODAY. THE STUDENTS COMING IN TODAY ARE HEAD AND SHOULDERS AND ABOVE WHERE I WAS AND THEY HAVE A TON OF RESEARCH EXPERIENCE AND SOME HAVE PAPERS AND I LOOK AT MY STUDENTS AND I'M SO GRATEFUL I WAS GIVEN THE OPPORTUNITY TO GO TO GRADUATE SCHOOL BECAUSE IT CHANGED MY LIFE AND CHANGED THE LIFE OF EVERYBODY AROUND ME. SO WHEN I GOT GEORGETOWN I ROTATED IN AN ANIMAL BEHAVIOR LAB AND TURNS OUT THAT WASN'T MY PASSION. I DON'T LIKE INSECTS. I DIDN'T WANT TO SIT AND OBSERVE ANIMALS. NONE OF THAT WAS REALLY MY THING. WHEN I ROTATED IN A DEVELOPMENT BIOLOGY LAB IT HAD ME. FOR THOSE WHO KNOW ME, IF YOU DO OR IF YOU'VE SEEN ME ON TWITTER, YOU'LL KNOW I'M HASHTAG -- THIS IS THE THING I DO AND WHAT I'M PASSIONATE ABOUT. I LEARNED THE LAB OF A DEVELOPMENTAL BIOLOGIST NEW AT THE UNIVERSITY AND CURRENTLY BE FUNDED BY AN NICHD R01 HER FIRST R01 AND THE FOCUS IN THE LAB WAS TO TRYING TO UNDERSTAND HOW FROG EMBRYOS DEVELOP AND TO UNDERSTAND HOW THE NERVOUS SYSTEMS WERE FORMED AND THE EARLY STEPS. MY DISSERTATION FOCUS WAS TRYING TO UNDERSTAND THE MECHANISMS THAT REGULATE THE INDUCTION AND MAINTENANCE OF THE CELLS THAT MAKE THE NERVOUS SYSTEM AND FROG EMBRYOS WERE OUR MODEL. IF YOU WATCH AT THE BEGINNING THERE WAS A BEAUTIFUL ZEBRAFISH DEVELOPING. I PUBLISHED A FEW PAPERS. I ALSO ENJOYED HAVING A GOOD TIME AND INTRODUCED TO A TYPE OF PROTEINS. IT COMES FULL CIRCLE BECAUSE I STILL STUDY THESE PROTEINS TO THIS DAY, DIFFERENT KINDS. ALL THESE FANTASTIC MOLECULE CONSERVED ACROSS SPECIES AND SOME INVERTEBRATES AS WELL. YOU CAN SEE A PICTURE OF ME. I HAD JUST JOINED THE LAB AND VERY GREEN AND SUPER EXCITED ABOUT RESEARCH. I WAS SO YOUNG. AS A LAB WE DID SOCIAL THINGS AND WORKED HARD AND I WAS IN THE LAB -- I STARTED GRADUATE SCHOOL IN 2003 AND GRADUATED WITH MY Ph.D. IN. 2009. WHAT I CAN SAY ABOUT GRADUATE SCHOOL BEING A FIRST-GEN PERSON BEING ACROSS THE COUNTRY FROM MY FAMILY WAS CHALLENGING. THERE WERE MANY TIMES I FELT LIKE I WANTED TO QUIT AND DIDN'T BELONG AND IT WAS THROUGH GRIT AND ALSO COMMUNITY THAT HELPED ME STAY. THAT MIXED WITH MY LOVE AND PASSION FOR THE SCIENCE AND IT CRAFTED MY DIRECTION. AT THE TIME WHEN I STARTED GRADUATE SCHOOL I THOUGHT I WANTED TO GO INTO BIO TECH AND THEN I STARTING MENTORING STUDENTS AND I REALIZED I REALLY ENJOYED MENTORING AND WORKING WITH STUDENTS. IN NATIONAL SOCIETY FOR DEVELOPMENTAL BIOLOGY I MET MY POSTD-DOCTORAL MENTOR AND SHE HS BEEN FUNDED THROUGH NICHD FOR A LONG A LONG LONG TIME AND WAS LUCKY SHE AGREED TO WRITE A DIVERSITY SUPPLEMENT AND THIS BROUGHT KNOW HER LAB AS A POST-DOCTORAL FELLOW TRYING TO IDENTIFY THE TRANSCRIPTIONAL DEVELOPMENTS FOR NEURAL CREST CELL DEVELOPMENT. IT'S A COMPLEX SUBJECT AND NEURAL CREST CELLS ARE STEM LIKE CELLS THAT MAKE THE PIGMENT CELLS, SMOOTH MUSCLE CELLS AND THERE'S CLEARLY VERY IMPORTANT AND IF ANYTHING GOES WRONG IN THE EARLY INVOLVEMENT YOU CAN HAVE DEVELOPMENTAL ANOMALIES IN ALL TISSUES. SHE IS ONE OF THE LEADERS OF THE FIELD OF DEVELOPMENT BIOLOGY AND ONE OF THE MOST FAMOUS PEOPLE WHO STUDIES NEURAL CREST CELLS SO THIS OPPORTUNITY WAS UNPARALLELED FOR MY CAREER PROGRESSION. WHILE I WAS IN HER LAB, I DID A LOT OF SCIENCE AND LEARNED A LOT OF NEW TECHNIQUES AND BEGAN MENTORING STUDENTS ON MY OWN SO SHE WOULD RECRUIT STUDENTS AND GAVE POSTDOCS THE OPPORTUNITY TO CRAFT THE PROJECTS AND THE DIRECTION FOR THE STUDENTS AND SO IT WAS VERY INDEPENDENT AND THAT WAS WHEN I KNEW I WANTED TO STAY IN ACADEMIA. WHILE I WAS THERE, I GAINED A LIKING FOR CELL ADHESION MOLECULES AND GOT MY FIRST BIG PAPER. A BLACK WOMAN AND HAD A SEVERE PREGNANCY WHERE I WOULD HAVE DIED AND WAS LUCKY ENOUGH TO HAVE SUPPORT FROM MY MENTOR SO I WAS ABLE TO GO ON BED REST AND SUPPORTIVE FUNDING SO I DIDN'T HAVE TO LOSE HEALTH INSURANCE AND A SUPPORTIVE DOCTOR TO CATCH THESE THINGS AND I HAD MY KID AND HE'S GREAT. ALSO HE'S BEEN DIAGNOSED WITH AUTISM AND ADHD WHICH ARE OTHER THINGS NICHD FUNDS AND WATCHING THE TALKS MAKES IT PERSONAL AND I'M A PERSONAL AND MECHANISTIC SCIENTIST BUT WHAT I DO HELPS ANSWER QUESTIONS THE CLINICAL SCIENTIST HAVE AND WE CAN WORK TOGETHER TO FIND EFFECTIVE TREATMENT FOR SOME OF THESE THINGS. SO IF YOU LOOK AT THE PICTURE OF THE LAB, THIS IS THE LAB ONE OF THE YEARS I WAS THERE AND OF THE PEOPLE HALF HAVE THEIR OWN LABS NOW AND SHE IS A FORCE IN DEVELOPMENTAL BIOLOGY WHO HAS MENTORED 40 PEOPLE WHO ARE PROFESSORS. MAKING THE CHOICE FOR YOUR MENTORS IS IMPORTANT BECAUSE SOME PEOPLE KNOW REALLY WELL KNOW HOW TO GUIDE OTHERS AND PROVIDE OPPORTUNITIES AND HAVING THE ABILITY TO NETWORK WITH PEOPLE AND HELP GET YOU TO THE NEXT SPOT IS CRUCIAL. SO I INTERVIEWED FOR A POSITION AS AN ASSISTANT PROFESSOR AT CALIFORNIA STATE UNIVERSITY NORTHRIDGE AND HERE I WAS HIRED AND THIS IS A PRIMARILY UNDERGRADUATE AND HISPANIC-SERVING INSTITUTION IN SOUTHERN CALIFORNIA IN THE NORTHERN REGION OF LOS ANGELES COUNTY AND CSUN IS A FANTASTIC UNIVERSITY WITH A NUMBER OF STUDENTS WHO ARE FIRST GENERATION AND PEL ELIGIBLE AND YOU'RE WORKING WITH STUDENTS WHO PROVIDE THE MENTORSHIP AND PROVIDING THE OPPORTUNITY FOR THOSE STUDENTS TO GET TO THE NEXT STEP AND CHANGE THEIR LIVES AND THE LIVES OF THEIR FAMILIES. I WAS PASSIONATE ABOUT UNDERGRADUATE RESEARCH AND I HAD A TEAM AND WE STUDIED NEURAL CREST DEVELOPMENT USING CHICKEN AND AXOLOTL EMBRYOS AND IN THREE AND A HALF YEARS I MENTORED STUDENTS AND THEY'RE ALL MOVING ON TO THE THE NEXT STEP AND FOR ME MY GOAL WAS TO LEARN HOW TO BE A BETTER MENTOR AND TEACHER A I THINK I'M A BETTER P.I. AND MENTOR FOR MY TIME THERE. ONE OF MY BICK PUSHES AS A PROFESSOR THERE WAS TO BRING MY STUDENTS TO CONFERENCES AND LET THEM GAIN OWNERSHIP OF THEIR PROJECTS AND FOR ME SINCE ONE OF THE THINGS THAT KEPT ME -- [NO AUDIO] AND ENSURED EVERY YEAR AT CSUN I BROUGHT MY STUDENTS TO DIFFERENT CONFERENCES SO THEY CAN FEEL WHAT IT'S LIKE TO PRESENT YOUR WORK AND DEFEND THE WORK AND BE EXCITED ABOUT SHOWING PEOPLE WHAT YOU ACCOMPLISHED BECAUSE THEY'VE ACCOMPLISHED SO MUCH STUFF. ALSO MOVING THERE WAS A BIG TRANSITION BECAUSE I WAS TEACHING A LOT AND TRYING TO RETURN A RESEARCH LAB AND I WAS STILL A MOM. MY SON IS GROWING IN EACH OF THESE PICTURES. IT WAS HARD TO FIND BALANCE AND SO WHEN I WAS OFFERED THE OPPORTUNITY OR WHEN I APPLIED TO U.C. DAVIS AND OFFERED THE POSITION I TOOK IT AND FOR ME THE BIG PUSH WAS BEING ABLE TO GROW MY LAB AT A RESEARCH INSTITUTION AND BEING ABLE TO TAKE ON Ph.D. STUDENTS AND HAVE STUDENTS WITH ME LONGER. THAT'S WHY I THEN MOVED TO U.C. DAVIS. SO NOW I'M IN U.C. DAVIS IN NORTHERN CALIFORNIA, A FANTASTIC SCHOOL AND WE HAVE ROAMING COWS AND ANIMALS TO LOOK AT AND THERE'S A PHENOMENAL COLLEGIAL ATMOSPHERE AND ALSO WE HAVE COOL STUFF TO WORK WITH. IT'S A BIG AG SCHOOL AND WE HAVE A VETERINARY SCHOOL AND THERE'S ROOM FOR COLLABORATION. SINCE I GOT TO U.C. DAVIS I'VE GOTTEN MY OWN EXTERNAL FUND IIN. MY LAB FOCUSES ON IDENTIFYING CONSERVED MECHANISMS AND NEURAL CREST CELLS AND HOW VARIETAL EXPOSURES CAN AFFECT THE DEVELOPMENT PROGRAMS. HERE IT HAS ALSO BEEN VERY IMPORTANT AND I'LL SHOW YOU I WORKED HERE NOW SO I'VE EXPANDED MY RESEARCH MODELS TO QUAIL CHICKEN AND AXOLOTL AND IT'S IMPORTANT TO ANSWER QUESTIONS USING THE APPROPRIATE MODEL OPPOSED TO FITTING THEM INTO YOUR RESEARCH MODEL. IF ANYONE WANTS TO COLLABORATE USING THESE ORGANISMS I'M HERE AND IT'S BEEN VERY AMAZING TO SEE HOW SIMILAR AND DIFFERENT THINGS CAN HAPPEN IN THE DIFFERENT VERTEBRATE ORGANISMS. AGAIN, HERE ONE OF MY MAIN FOCUSES IS MENTORING. PART OF MY CAREER HAS BEEN TO CREATE A SUMMER PROGRAM CALLED FUNCTIONAL ANALYSIS OF CREST DEFECTORS OR FACES WHERE WE BRING SUMMER STUDENTS AHERE AND THEY DO FULL-TIME RESEARCH AND I MENTOR FOR A PREP PROGRAM AT U.C. DAVIS AND I HAVE A MENTOR FOR BIO GAP AND A PROGRAM CALLED STAR AN THESE ARE UNDERGRADUATE AND PROFESSIONAL SCHOOL PROGRAMS FOR STUDENTS TO GAIN RESEARCH. FOR ME, [NO AUDIO] AND SO JUST TO QUICKLY TOUCH ON THE MAJOR QUESTIONS IN MY LAB, THIS IS ROXY MY BULLDOG AND NOTING THE DIFFERENCES IN THE FORMATION OF THE CRANIAL FACIAL STRUCTURES IN THE SAME ORGANISMS ALLOW FOR VARIETY AND KNOWING SOMETIMES WHEN THE PROCESSES GO WRONG YOU CAN GET CLEFT PALATE AND IT'S IMPORTANT TO UNDERSTAND WHAT ALLOWS THE CELLS TO FORM NORMALLY SO WE CAN UNDERSTAND WHAT'S GOING WRONG IN THE DEVELOPMENT DISORDER AND CRUCIAL TO UNDERSTAND WHETHER THE MECHANISM CONSERVED ACROSS SPECIES. DO CHICKEN AND AXOLTLS CONTROL OTHER ORGANISMS? AND ONE OF THE QUESTIONS I ASKED IS WHETHER OR NOT EXPOSURES TO THINGS LIKE ENVIRONMENTAL TOXINS AND/OR MEDICATIONS IF EXPOSURES DURING DEVELOPMENT CAN AFFECT THE FORMATION OF NEURAL CREST CELLS WHICH WOULD AFFECT NEURAL CREST DERIVATIVES. MY JOURNEY HAS BEEN VERY DIRECT HONESTLY THOUGH I DIDN'T KNOW WHERE I WAS GOING I WAS LUCKY ENOUGH TO HAVE OPPORTUNITIES AND I TOOK THEM AND FOLLOWED THROUGH WITH THEM [NO AUDIO] AND YOU MAY NOT BE SURE ABOUT IT BUT MANY TIMES IF YOU FOLLOW THROUGH WITH THAT IT WILL GET YOU WHERE YOU WANT TO GO AND THAT'S BEEN SUCH A BIG DEAL FOR ME AND ALL THE OTHER PRESENTERS HAVE DONE SUCH A GOOD JOB OF GIVING YOU THE BEST ADVICE TO GET TO WHERE YOU'D WANT TO GO AND SO WITH THAT I WOULD LIKE TO THANK FOR THE INVITATION TO SPEAK AND HAPPY TO TAKE ANY QUESTION ANY JOURNEY. QUESTIONS ABOUT MY JOURNEY. AS A HIGH SCHOOL STUDENTS I WAS INTERESTED IN PHARMACY AND I WENT TO PHARMACY SCHOOL AND DROPPED THAT RESEARCH AND SO I CHANGED MY CAREER PATH BASED ON THE OPPORTUNITY TO HAVE RESEARCH. JUST BEING EXPOSED TO DIFFERENT OPPORTUNITIES, DIFFERENT QUESTIONS MY MOM WOULD TAKE ME TO THE NATURE CENTER AND HOW TO THOSE EXPERIENCES OPENED MY EYES TO DIFFERENT THINGS. DEFINITELY OPPORTUNITIES. >>AS A MENTIONED IN HIGH SCHOOL I THOUGHT THAT I WANTED TO BE A MEDICAL DOCTOR BUT IT WAS FOR THE WRONG REASONS. AT THAT TIME MY FAMILY WAS A BIG INFLUENCE IN WANTING ME TO GO TO MEDICAL SCHOOL BUT I WAS UNFORTUNATE THAT I DIDN'T GET ACCEPTED TO THOSE PROGRAMS AND I WAS AS DR. BURTON TALKED ABOUT OPPORTUNITIES. I HAD EXPOSURE TO DOING RESEARCH AND WE HAD A RESEARCH SCIENCE CLASS IN MY HIGH SCHOOL AND THEN I WENT ON TO M.I.T. WHERE 70% TO 80% OF UNDERGRADS DO RESEARCH BECAUSE THEY HAVE FUNDING OPPORTUNITIES. SO JUST NOT BEING AFRAID TO TRY NEW THINGS AND TAKING VRCHB OF ADVANTAGE OF THE OPPORTUNITIES AND ADVANTAGE OF NETWORKING OPPORTUNITIES. I'M AN INTROVERT. I DON'T REALLY LOVE CHITCHATS BUT THE CONVERSATIONS YOU HAVE WHERE SOMEBODY BRINGS UP SOMETHING THAT CAN CHANGE YOUR DIRECTION IN LIFE I THOUGHT I'D APPLY TO A Ph.D. BECAUSE MANY PEOPLE WENT TO DO STRAIGHT [NO AUDIO] TALKING TO PEOPLE FROM ALL KINDS OF CAREER PATHS. THERE'S NO WRONG ANSWER. I ALSO THINK THAT GOING WITH YOUR GUT FEELING IS SOMETHING THAT WAS TOLD TO ME WHEN I GAINED RESIDENCY AND A SAID NO, I NEED AN EXCEL SPREAD SHEET AND NEED TO BE CHECKING OFF WHY I'M DOING SOMETHING BUT GUT FEELINGS ARE PRETTY STRONG AND GOING WITH WHERE YOUR HEART LEADS YOU AND FIGURING OUT YOUR PASSION. >>DR. ROGERS? >>I WOULD AGREE. I AGREE WITH EVERYTHING THE OTHERS SAID. HONESTLY, IN HIGH SCHOOL THERE'S SO MUCH TIME AND I THINK YOUR CHILD WILL FIND OUT IN COLLEGE, TAKE THE OPPORTUNITIES, DO A RESEARCH VOLUNTEER IF THEY CONDITION OR SEE IF THEY CAN GET A JOB BECAUSE LET'S BE HONEST, RESEARCH IS HARD AND IT ISN'T FOR EVERYBODY. IT CAN BE AMAZING AND IT CAN BE HEARTBREAKING BUT IF YOU HAVE A CHILD REALLY INTERESTED IN SCIENCE I WOULD SAY TRY DIFFERENT TYPES OF SCIENCE BECAUSE IT'S NOT ALL THE SAME. DOING MICROBIOLOGY IS VERY DIFFERENT THAN CELL BIOLOGY OR USING CELL ORGANISMS. [NO AUDIO] AND TAKE TIME TO SEE IF THAT'S WHAT THEY WANT TO DO. >>THANK YOU. DR. GHOSAL. >>CAN YOU HEAR ME NOW? >>YES, I CAN. >>THE POSITION I'M AT RIGHT NOW AND A CANNOT THINK LIKE DURING MY HIGH SCHOOL IT WAS WAY DIFFERENT AIMS THAT I HAD 12, 30 YEARS BACK. I WOULD SAY FOCUS ON THE SHORT TERM GOALS. I KNOW [NO AUDIO] -- AND BASED ON MY CURRENT PREFERENCES LIKINGS AS ALL THE OTHER CO-PANELISTS MENTIONED. RESEARCH IS NOT FOR SOMEONE EVEN IF SOMEONE IS THINKING THEY MIGHT BE ABLE TO -- THEY MAY BE CONFIDENT GOING FOR RESEARCH AT HIGH SCHOOL IT MIGHT CHANGE DOWN THE LINE OR CAN HAPPEN THE OTHER WAY AROUND. I WOULD SAY DON'T THINK FOR THE LONG-TERM GOAL AT THE MOMENT. >>GREAT. THANK YOU SO MUCH. THE NEXT QUESTION IS REGARDING UNDER REPRESENTED STUDENTS IN S.T.E.M. THE QUESTION RELATES TO WHAT ADVICE WOULD YOU HAVE FOR THOSE STUDENTS WHO ARE REALLY CAUTIOUS ABOUT STEPPING OUTSIDE OF THEIR COMFORT ZONES. WHAT ADVICE WOULD YOU GIVE THEM? DR. BURTON? >>THIS IS A GREAT QUESTION. TO STEP OUT OF YOUR COMFORT ZONE, DO IT A LITTLELY -- DO IT LITTLE BY LITTLE. AT THE END OF THE DAY I'M AN EXTROVERTED INTROVERT. I WAS THE ONLY BLACK PERSON IN MY CLASSES IN COLLEGE I DIDN'T HAVE ANYONE WHO LOOKED LIKE ME. NO ONE WAS SAY DO YOU NEED HELP? I HAD TO GO GET HELP. IT'S THE SAME THING WITH A PH.D. [NO AUDIO] MADE YOU UNCOMFORTABLE BUT YOU HAVE TO PUT YOURSELF OUT THERE SO THAT YOU CAN SUCCEED. YOU HAVE TO MAKE A COMMUNITY OF PEOPLE. I WOULD CALL MY MOM ALMOST EVERY DAY AT GRAD SCHOOL SAYING I WANTED TO QUIT. SHE WAS PART OF MY COMMUNITY. WE WERE GOING THROUGH GRAD SCHOOL TOGETHER AND WE WOULD CRY ON EACH OTHER'S SHOULDER AND YOU BUILD THAT COMMUNITY TO HELP YOU LEAN ON SO YOU CAN START TO GET THE CONFIDENCE SO THAT YOU CAN GO OUT AND MEET PEOPLE AND GET THE INFORMATION AND/OR WHATEVER YOU MAY NEED FROM THE INSTITUTION, YOUR MENTOR, YOUR COLLABORATORS, JUST PUT YOURSELF OUT THERE BUT DO IT LITTLE BY LITTLE. >>I'LL SUPPORT THAT. GOING OUT OF YOUR COMFORT ZONE COULD BE HARD FOR SOME SPECIFIC PEOPLE AND I REALLY WANT TO ECHO WHAT DR. BURTON MENTIONED SMALL STEPS AT A TIME. BUT I THINK ONE OF THE THINGS THAT A LOT OF US -- SO I THINK LOOKING OUT FOR A ROLE MODEL IS USEFUL BUT WHETHER WE SHOULD FIND SOMEONE FOR THEM THAT COULD BE A VERY SUBJECTIVE THING, I GUESS. >>THANK YOU. DR. TANG GIRDWOOD. >> [NO AUDIO] THE MENTORSHIP GROUP WE'RE CURRENTLY WRITING A PAPER ON THE IMPORTANCE OF PEER MENTORSHIP. NOT EVERYONE IS GOING TO LOOK LIKE YOU IF YOU'RE FROM AN UNDER REPRESENTED GROUP BUT TRYING TO FIND PEER MENTORS WHO HAVE A MORE SHARED EXPERIENCE AND SHARING WHAT IT'S BEEN LIKE IS LIKELY PRETTY USEFUL. >>I AGREE WITH EVERYBODY AND I WOULD ADD TO THAT THAT FOR HISTORICALLY EXCLUDED AND MINORITIZED GROUPS, ACADEMIA DOES NOT LOOK LIKE YOU RIGHT NOW SO IT'S IMPORTANT TO FIND ALLIES AND SUPPORTERS WHEREVER YOU CAN AND SO KNOW THAT YOU WILL FIND THERE ARE PEOPLE WHO ARE SAFE AND PEOPLE WHO YOU CAN BE YOURSELF WITH AND PEOPLE WHO WILL ACCEPT YOU FOR ALL OF YOU AND THEY DON'T HAVE TO LOOK LIKE YOU SO YOU CAN FIND A COMMUNITY RIGHT NOW AND WE CAN CONTINUE BUILDING OUR COMMUNITY AS TIME GOES ON. >>GREAT, THANK YOU SO MUCH. DR. GHOSAL I THINK YOU TOUCHED ON THIS, ON FAILURES AND SELF-DOUBT IN YOUR TALK. SO ONE OF THE QUESTIONS FROM THE AUDIENCE MEMBERS IS DURING YOUR CAREER JOURNEY, HAVE YOU EVER FELT THAT YOU WERE NOT ON THE RIGHT PATH OR LIKE YOU DID NOT BELONG IN YOUR FIELD? AND IF SO HOW DID YOU OVERCOME THAT FEELING? >>I'M FIND IF DR. BURTON SPEAKS FIRST. I CAN FOLLOW. >>GO AHEAD. >>I FELT LIKE I DIDN'T BELONG SEVERAL TIMES. YOU JUST HAVE TO DIG IN AND GO TO YOUR WHY. SO WRITING THAT STATEMENT LIKE YOUR MISSION STATEMENT AND GETTING BACK TO THAT AND REMEMBERING THAT YOU HAVE THE SKILLS JUST LIKE EVERYONE ELSE. YOU HAVE TO BELIEVE IN YOURSELF AND THAT HELPS YOU OVERCOME SOME OF THAT. SOMETIMES YOU HAVE TO CRY IT OUT, TALK TO SOMEONE, GET SOME REASSURANCE AND JUST KEEP IT MOVING. BUT IT DOES CREEP IN. IT DOES CREEP IN. >>DR. GHOSAL DO YOU HAVE MORE ADVICE TO ADD TO WHAT YOU SAID PREVIOUSLY? >>MENTORS HELP A LOT IN THIS REGARD. I'M NOT IN THE POSITION FIVE YEARS BACK I DIDN'T THINK OF IT. I ALWAYS PLANNED NOT TO BE IN A TEACHING POSITION AND STILL I HAVE TO TEACH. I WAS FRIGHTENED TO MEET A BIG ROOM FULL OF STUDENTS. I THOUGHT I'D BE WASTING THEIR HARD SPENT MONEY. WHAT IF I FAIL TO DELIVER OR PROVIDE KNOWLEDGE THEY NEED. I WAS ALWAYS IN THAT DOUBT. MY MENTORS HELPED ME. [NO AUDIO] THEY ALL SAID YOU SHOULD NOT WORRY ABOUT THAT AT THIS MOMENT. JUST TRY THIS. I GOT AN OPPORTUNITY TO TEACH. IT CHANGED MY PERSPECTIVE. IT'S SO REWARDING TO CONNECT WITH A STUDENT AND CONVEY THE KNOWLEDGE YOU HAVE AND WHAT THEY ARE SEEKING. I HAD THE SELF-DOUBT. I WAS LACKING CONFIDENCE. MY MENTORS PROVIDED THAT AND THEN I GOT THE COURAGE TO TRY IT OUT AND NOW I AM WAY MORE COMFORTABLE IN REACHING OUT TO NEW STUDENTS. GOOD MENTORSHIP CAN HELP THAT. >>YES, IT COMES DOWN TO GOOD MENTORING. DR. TANG GIRDWOOD. >>I WOULD SAY THERE MANY TIMES EVER SINCE I SINCE I BECAME PART OF THE PROGRAM WHERE THEY JUDGE THE SUCCESS OF THE PROGRAM INTO HOW MANY GRADUATES GET R01 I QUESTIONED DID I PICK THIS PATH BECAUSE I FELT AN OBLIGATION TO DO WHAT IS CONSIDERED A SUCCESSFUL APPLICANT AND ALSO WHY I TOOK AN EXTRA YEAR TO DO [NO AUDIO] ALL THE DIFFERENT PATHWAYS AND WASN'T DOING SOMETHING JUST BECAUSE I FELT OBLIGATED. WE SHARE CONCERNS WITH MENTORS AND I THINK IT'S HELPFUL TO KNOW OTHER PEOPLE HAVE -- IF YOU THINK YOU'RE THE ONLY ONE HAVING IT YOU ARE NOT AND FINDING A GROUP OF PEOPLE YOU CAN WHETHER IT'S TRADITIONAL MENTORS OR PEER MENTORS TO SHARE YOUR CONCERNS. >>THANK YOU FOR THAT. DR. ROGERS? >>I HAVE FELT THIS CONSTANTLY IN MY CAREER. I HAVE HAD IMPOSTER SYNDROME AND FELT LIKE I DON'T BELONG. RECENTLY WHEN I TRANSITIONED FROM A PRIMARILY UNDERGRADUATE INSTITUTION TO THIS PLACE, THIS RESEARCH INSTITUTION I WAS READY TO QUIT BECAUSE I FELT LIKE I CAN'T HACK IT. I DONT BELONG HERE. HONESTLY IT WAS MY PEERS THAT REACHED OUT TO ME AND UNKNOWN SPONSORED AND MENTORS FROM TWITTER. ONE TWITTER COMPLAINT ABOUT HOW I FELT IT WITH A BIT WORKING HAD PEOPLE REACHING OUT TO ME I DIDN'T KNOW PERSONALLY BECAUSE THEY FELT I WAS VALUABLE ENOUGH TO STAY AND THAT CHANGED MY PERSPECTIVE ON EVERYTHING. [NO AUDIO] AND TRYING TO MAKE A HUGE DIFFERENCE IN THE LIVES OF STUDENTS OR DOING THE EXTRA WORK AND I THINK I CAN MAKE A DIFFERENCE THERE SO IT'S WORTH IT FOR ME TO IMPROVE AND HELP OTHERS TO HELP GET BETTER AT THE THINGS THAT MAYBE I'M NOT SO GREAT AT. >>WELL, THANK YOU. I BELIEVE WITH THAT WE HAVE COME TO THE END OF OUR TIME. I WANT TO THANK THE PANELISTS FOR A VERY ENGAGING AND INFORMATIVE DISCUSSION AND THANK YOU EVERYBODY FOR JOINING US AT OUR 60th ANNIVERSARY CELEBRATIONS. -- THANK YOU FOR SHARING YOUR STORIES AND NOW TO QUOTE EUNICE KENNEDY SHRIVER IT'S MY JOB TO MOVE ON AND I'D LIKE TO THANK OUR PANELISTS AND MODERATORS AND ORGANIZERS. PAUL WILLIAMS, CHRISTINA STYLE, MARIA YOUNG AND THE REST OF THE TEAM IN NICHD'S OFFICE OF COMMUNICATIONS. I'D ALSO LIKE TO THANK YOU, THE AUDIENCE, FOR PARTICIPATING AND FOR YOUR INSIGHTFUL QUESTIONS TO OUR PRESENTERS. I HOPE THAT WE'VE GIVEN YOU A SENSE OF THE DEPTH AND BREADTH OF OUR RESEARCH PORTFOLIO AND THAT WE'VE SPARK YOUR IMAGINATION AND HELPED YOU ENVISION WHAT THE NEXT FIVE TO 10 YEARS OF OUR SCIENCE MAY LOOK LIKE. NICHD'S INDEED A PLACE WHERE THE FUTURE IS BRIGHT AND WHERE OUR RESEARCH CAN HAVE [NO AUDIO] THANK YOU ALL AGAIN AND HERE'S TO ANOTHER 60 YEARS OF INNOVATION. HAVE A GREAT EVENING, EVERYBODY.