CAPTIONS START IN A FEW MINUTES NOW I WILL TURN THE MEETING OVER TO KATHRYN SPONG, THE DIRECTOR OF OUR DIVISION OF INTRAMURAL RESEARCH. >> GOOD MORNING, EVERYONE. I WANTED TO REVIEW OUR CONFIDENTIALITY AND CONFLICTS OF INTEREST. YOU WILL FIND, SOME OF YOU HAVE ALREADY FOUND A RED FOLDER AT YOUR SEAT, THAT INCLUDES YOUR INDIVIDUAL CONFLICT OF INTEREST CERTIFICATION FORM AND YOUR CONFLICT OF INTEREST RECUSAL LIST. IN ADDITION TO CONFLICTS LISTED ON THE SPECIAL ACTIONS DOCUMENT, THE CONFLICT OF INTEREST RECUSAL LIST IDENTIFIES UNIVERSITIES AND ORGANIZATIONS IN WHICH YOU HAVE A FINANCIAL INTEREST. IF THERE IS A SPECIFIC DISCUSSION ON ANY ORGANIZATION OR UNIVERSITY ON THIS LIST, IN ADDITION TO THOSE THAT ARE LISTED IN THE SPECIAL ACTIONS DOCUMENT, YOU WILL BE REQUIRED TO RECUSE YOURSELF FROM THE DISCUSSIONS AND LEAVE THE ROOM. AT THE END OF THIS AFTERNOON'S CLOSED SESSION REVIEW OF AM APPLICATIONS I WILL REMIND UH-UH NEED TO SIGN YOUR INDIVIDUAL CONFLICT OF INTEREST CERTIFICATION FORM. PLEASE REMEMBER THAT YOU CANNOT SERVE ON ANY NIH PEER REVIEW PANEL WHILE SERVING AS A COUNCILMEMBER. I REALIZE THAT'S DISTRESSING, MANY OF YOU WOULD LIKE TO SERVE THE COUNCIL AND THE INSTITUTE IN MANY WAYS, BUT YOU CANNOT SERVE ON A PEER REVIEW PANEL WHILE SERVING AS A COUNCILMEMBER. IT IS NIH POLICY THAT AN INDIVIDUAL CANNOT SERVE ON BOTH THE FIRST AND SECOND LEVELS OF PEER REVIEW. ANY QUESTIONS REGARDING CONFLICTS OF INTEREST IN ROWR IN YOUR RED FOLDERS? GREAT. THE COUNCIL MINUTES FROM THE JANUARY 26TH, 2014 MOTORED IS POSTED ON THE INTRANET AND THE COUNCIL MEETING WEBSITE. I TRUST YOU ALL HAVE HAD HOPEFULLY SOME TIME TO TAKE A LOOK AT THOSE MINUTES AND I'D LIKE TO ASK FOR A MOTION ON ACTION YOU'D LIKE TO TAKE ON THOSE MINUTES. >> MOVE TO BE APPROVED. >> AND A SECOND SM ALL IN FAVOR? ANY OPPOSED? AND DR. FLYNN ON VIRTUAL, MAY I HAVE YOUR VOTE FOR THE MINUTES? >> APPROVE. >> THANK YOU. SO WE'LL HAVE THE DOCUMENTS SHOW THAT THE COUNCIL MINUTES FROM THE LAST COUNCIL ARE APPROVED. I'D LIKE OH CALL YOUR ATTENTION ON THE AGENDA TO THE FUTURE MEETING DATES. THESE ARE LISTED THROUGH SEPTEMBER OF 2016, PREDOMINANTLY ON THURSDAYS ALTHOUGH THAT SEPTEMBER OF 2016 IS A MONDAY MEETING. PLEASE MAKE NOTE OF THESE MEETINGS AND PUT THEM ON YOUR CALENDARS. WE REALIZE YOU ALL ARE VERY, VERY BUSY. IF WE DON'T GIVE YOU AMPLE TIME, IT'S DIFFICULT TO GET THEM ON YOUR SCHEDULE. NOW I'D LIKE TO TURN THE MEET BACK OVER TO MR. GUTTMACHER. >> YOU'LL BE COMFORT TO KNOW THAT NOT ONLY DO WE ALLOW TO SERVE ON STUDY SECTION BUT YOU ALSO GET ONE GET OUT OF JAIL CARD THAT YOU CAN USE AT ANY TIME. WE REALLY DO WELCOME THE NEW MEMBERS OF THE COUNCIL. WE'RE LOOKING FORWARD TO YOUR BEING ENGAGED IN SUBSTANTIVE CONVERSATIONS ABOUT WHAT WE AS AN INSTITUTE ARE DOING AND SHOULD BE DOING. WE REALLY LOOK TO YOUR GUIDANCE IN TERMS OF JUST THINKING HOW WE APPROACH THIS VERY BROAD MISSION, ONE OF THE THINGS I THINK THAT HAPPENS TO ALL COUNCILMEMBERS AS YOU GET MORE FAMILIAR WITH NICHD, YOU BECOME MORE AWARE OF HOW BROAD THE MISSION IS. MANY COME TO COUNCIL WITH THAT PARTICULAR WINDOW OF NICHD WHICH TENDS TO MIRROR THEIR OWN INTELLECTUAL ACTIVITIES AND THEN REALIZE HOW BROAD OUR MISSION IS. AS YOU WILL SEE, PART OF WHAT WE DEPEND UPON YOU IS BOTH TO DELVE MORE DEEPLY INTO YOUR OWN AREA OF EXPERTISE BUT ALSO TO HELP US PRIORITIZE THE VERY BROAD MISSION. SO WE LOOK FORWARD TO THAT. WE'D LIKE TO HAVE THE FIVE NEW MEMBERS OF COUNCIL WHO ARE JOINING US IN VARIOUS WAYS TODAY TO INTRODUCE THEMSELVES BRIEFLY, TELL US A LITTLE ABOUT YOURSELVES AND WHAT ARE YOUR PARTICULAR SIGN FISK AND PROFESSIONAL INTERESTS. MAYBE I'LL START FIRST WITH OUR VIRTUAL ATTENDEES, PATRICIA FLYNN, CAN YOU TELL US A LITTLE BIT ABOUT WHO YOU ARE AND WHAT BACKGROUND YOU BRING TO OUR COUNCIL? >> SURE. I AM INTERESTED IN PEDIATRIC DISEASES. I'M CURRENTLY A MEMBER WHICH IS THE CORRELATIVE -- I REALLY HAVE SORT OF TWO VERY DISTINCT AREAS OF INTEREST IN RESEARCH. THE FIRST IS IN PEDIATRIC HIV INFECTION PREDOMINANTLY ADOLESCENT, AND MOTHER TO CHILD TRANSMISSION, AND THE SECOND SINCE ST. JUDE IS A CANCER HOSPITAL, ALSO VERY MUCH INVOLVED IN MANAGEMENT OF IMMUNOCOMPROMISED CHILDREN. I'M A CLINICAL RESEARCHER BY TRAINING AND PRACTICE, ALTHOUGH I DID SPEND A LITTLE BIT OF TIME IN THE LABORATORY DURING MY TRAINING. >> THANK YOU. >> THANK YOU. WE HOPE YOU CAN HEAR US BETTER THAN WE CAN HEAR YOU. WE WERE ABLE TO READ YOUR MESSAGE SO WE ARE AWARE OF WHAT YOU SAID. AND WELCOME TO OUR COUNCIL. >> I'LL PICK UP THE PHONE NEXT TIME. THAT MAY WORK BETTER. >> THAT DOES WORK A LITTLE BETTER MAYBE. THANKS. BUT WE DID HEAR YOU. SHEILA, WHO I BELIEVE IS JUST ON PHONE, NOT ON VIDEO, CAN YOU TELL US A LITTLE BIT ABOUT YOUR BACKGROUND? >> UNFORTUNATELY IT'S NOT WORKING AT ALL. I DON'T KNOW IF THERE'S ANYTHING WE CAN DO TO IMPROVE THAT PHONE CONNECTION. BUT AGAIN WE WILL TRY TO COME BACK TO YOU LATER IF WE CAN. >> DOCTOR, CAN YOU MUTE YOUR COMPUTER? >> SHE SAID I'M AT THE COMPUTER. >> CAN YOU MUTE YOUR COMPUTER? AND THEN TALK ON THE PHONE? >> IF WE CAN SOLVE THAT PROBLEM, WE'LL HAVE YOU INTRODUCE YOURSELF LATER, BUT WE CERTAINLY DO THANK YOU FOR JOINING US ON COUNCIL. AND AGAIN, WE HOPE YOU CAN HEAR US WELL. NOW GOING AROUND THE TABLE, HAVING THE NEW MEMBERS INTRODUCE THEMSELVES, DR. PATRELL, WELCOME TO THE COUNCIL. TELL US A LITTLE ABOUT YOUR BACKGROUND. >> I'M FROM OHIO STATE UNIVERSITY, AND MY RESEARCH BACKGROUND IS IN BEHAVIORAL GENETICS AND CHILD DEVELOPMENT, SO MY WORK IS BASICALLY ON QUANTITATIVE MOLECULAR GENETIC APPROACHES TO THE DEVELOPMENT OF THINGS LIKE LANGUAGE, READING, MATHEMATICS, AND THEN ALSO MORE RECENTLY TO NEUROBIOLOGICAL MARKERS USING FMRI AND EEG. AND THANK YOU FOR HAVING ME AND IT'S NICE TO BE HERE. >> NEXT, GREG KAUF. >> GOOD MORNING. FIRST I'D LIKE TO THANK YOU FOR THE INVITATION TO ATTEND COUNCIL. I'M CURRENTLY DIRECTOR OF RESEARCH AND DEVELOPMENT IN THE GLOBAL HEALTH POPULATION NUTRITION GROUP AT FAMILY HEALTH INTERNATIONAL 360 IN RALEIGH-DURHAM. I JUST ARRIVED THERE ABOUT SIX MONTHS AGO, HAVING COME FROM THE UNIVERSITY OF KANSAS MEDICAL CENTER, WHERE I WAS ASSOCIATE VICE CHANCELLOR OF RESEARCH. I STARTED MY CAREER AT THE UNIVERSITY OF PENNSYLVANIA. IN RESEARCH. I'M A PHYSIOLOGIST BY TRAINING, IN THE OB-GYN DEPARTMENT THERE FOR MANY YEARS BEFORE I MOVED ON TO WYATT PHARMACEUTICALS WHERE I WAS IN THE DISCOVERY GROUP IN WOMEN'S HEALTHCARE. >> AGAIN, WELCOME TO COUNCIL. GEORGE FADAY. >> GOOD MORNING. AGAIN, I'M VERY GRATEFUL TO BE ON COUNCIL. I'M AT MATERNAL FETAL MEDICINE AT THE UNIVERSITY OF TEXAS MEDICAL BRANCH IN GALVESTON, AND MY AREA OF RESEARCH IN THE LAB IS ON FETAL AND MATERNAL PHYSIOLOGY MOSTLY AS APPLIED TO DEVELOPMENTAL PROGRAMMING, AND I'M ALSO INVOLVED IN SEVERAL CLINICAL TRIALS RELATING TO OBSTETRICAL COMPLICATIONS. >> THANK YOU, GEORGE, AND WELCOME. I SUPPOSE IN THE BACKGROUND OF THOSE MEMBERS OF COUNCIL DOES UNDERSCORE HOW BROAD IS THE MISSION OF THIS INSTITUTE AND THEREFORE HOW BROAD ARE THE TYPES OF EXPERTISE THAT WE NEED TO CALL ON TO DO OUR JOBS WELL. I'M GOING TO TO GO UP TO THE PODIUM AND GIVE YOU MY TRADITIONAL DIRECTOR'S REPORT. I'M GOING TO START OUT TODAY A LITTLE NON-TRADITIONALLY IN THAT I WANT TO MARK THE FACT THAT IN FEBRUARY THE SECOND, BOB COOK, WHO WAS REALLY INSTRUMENTAL IN FOUNDING NICHD DIED, AND WE'RE GOING TO HAVE LATER THIS MORNING DUANE ALEXANDER, WHO KNEW BOB QUITE WELL, IS GOING TO SAY SOMETHING MORE ABOUT HIM, BUT I JUST WANTED TO TAKE A MOMENT ON BEHALF OF THE INSTITUTE AS DUANE WILL LATER TO SAY HOW IMPORTANT BOB WAS NOT JUST IN THE FOUNDING OF THE INSTITUTE BUT AS YOU CAN SEE, HE WAS A DIFFERENT KIND OF TRIPLE THREAT. HE SERVED IN ALL THREE OF OUR DIFFERENT ADVISORY BOARDS AND COUNCILS THAT WE HAVE AT NICHD. HE MAY BE THE ONLY PERSON EVER TO WIN THAT HONOR. THAT I DON'T KNOW FOR SURE, SOME OF THE OTHERS OF YOU ARE GOING IN THAT DIRECTION BUT I'M NOT SURE ANYONE ELSE HAS ACHIEVED TRIAD. BUT HE REALLY WAS IMPORTANT TO THE NICHD. AS WE HAD OUR 50TH ANNIVERSARY A COUPLE YEARS AGO, I WAS FORTUNATE TO BE TO SPEND TIME TO TALK ABOUT NICHD'S FOUNDING. IF YOU TYPE IN BOB COOKE'S NAME, YOU'LL FIND IT. AND YOU'LL HEAR A LITTLE MORE ABOUT BOB LATER THIS MORNING. I'M GOING TO TALK AS I USUALLY DO ABOUT THINGS HAPPENING AROUND NIH IN GENERAL, SOME SPECIFIC ABOUT NICHD, TELL YOU WHAT'S GOING ON ON THE HILL, LEGISLATIVE UPDATES, AND TIME FOR DISCUSSION OF ANY OF THAT YOU'D LIKE TO HAVE, PLEASE FEEL FREE TO INTERRUPT ME AS I'M GOING FORTH WITH THIS. SO IN TERMS OF NEWS FROM NIH, A COUPLE OF APPOINTMENTS TO MAKE YOU AWARE OF. ONE OF THEM IS THAT HANNA VALENTINE WAS RECENTLY NAMED AS THE FIRST EVER CHIEF OFFICER FOR SCIENTIFIC WORKFORCE DIVERSITY WITHIN THE OFFICE OF THE DIRECTOR AT NIH. AND THIS MARKS, I THINK, NIH, WHICH IS ALWAYS OR FROM DECADES REALLY TRIED TO WORK IN DIVERSIFYING THE SCIENTIFIC WORKFORCE, NIH RECOGNIZING THE FACT THAT BOTH NIH ITSELF AND THE SCIENTIFIC COMMUNITY, DESPITE DECADES OF TRYING, HAS NOT DONE AS WELL AT THIS AS WE SHOULD BE. SO IN PART OF AN EFFORT TO TAKE THIS AS A EVEN MORE SERIOUS CHALLENGE PERHAPS THAN IN THE PAST, BRINGING HANNAH ON BOARD, WHO BRINGS WITH HER BOTH A DISTINGUISHED ACADEMIC CAREER IN TERMS OF HER OWN CLINICAL AND RESEARCH INTERESTS IN CARDIOVASCULAR MEDICINE BUT ALSO SOME YEARS OF LEADERSHIP AT STANFORD IN TERMS OF THINKING ABOUT ISSUES OF DIVERSITY AND LEADERSHIP, AND I CAN TELL YOU SHE'S HIT THE GROUND RUNNING, HAPPENED TO BE CHAIRING THE SEARCH COMMITTEE THAT WE BROUGHT HER IN TO HELP US DIVERSIFY THE POOL OF CANDIDATES MORE BROADLY, ET CETERA, SO SHE'S LOOKING ACROSS EVERYTHING THAT NIH DOES, INCLUDING THE WORKFORCE AT NIH, BUT ALSO VERY BROADLY THE SCIENTIFIC WORKFORCE, SEEING WHAT WE MIGHT DO TO BETTER DIVERSIFY THINGS. THIS IS ANOTHER APPOINTMENT AT NIH OF WHICH YOU'RE PROBABLY AWARE AND YOU'LL BE MUCH MORE AWARE AGAIN LATER THIS MORNING THAT YVONNE, WHO YOU KNOW, OF COURSE, HAD BEEN PLANNING TO RETIRE FROM THE FEDERAL WORKFORCE RIGHT ABOUT NOW, ACTUALLY, AS ALL OF YOU KNOW WHO SPENT TIME AROUND NICHD, YVONNE A WOMAN OF MANY TALENTS. ONE THINGS SHE'S LOUSY AT IS RETIRING. SHE REALLY BEFORE THIS WASN'T GOING TO DO A VERY GOOD JOB OF RETIRING BUT THIS WAS REALLY FAILING IT IN A BIG WAY. WHAT HAPPENED WAS THAT THE LONG TIME ONLY HEAD OF THE NATIONAL INSTITUTE ON MINORITY HEALTH AND HEALTH DISPARITIES DECIDED TO STEP DOWN AFTER 24 YEARS RUNNING THAT OPERATION, AND FRANCIS COLLINS, LOOKING AROUND THE NIH -- I GIVE FRANCIS KRED ILT CREDIT FOR DOING A LOT OF THINGS INTELLIGENTLY FOR A LOT OF THINGS, THIS WAS A NO-BRAINER I CAN TELL YOU, SHE IS TRULY AN ACTIVE ACTING DIRECTOR. SHE HAS TAKEN THIS ON NOT AS THE KIND OF THING TO KEEP THINGS KIND OF RUNNING UNTIL A NEW DIRECTOR SHOWS UP, BUT REALLY MAKING SURE TO TRY TO OPTIMIZE THE FUNCTION OF NIMHD DURING HER TIME THERE. SO SHE STARTED THAT ON APRIL PIRS, WHICH MEANT THAT SHE LEFT US ALMOST ENTIRELY. WE STILL USE HER WISDOM AS WE CAN GET TIME WITH HER BUT SHE IS QUITE BUSY IN THIS NEW ROLE. YOU'LL AGAIN HEAR A LITTLE MORE ABOUT THAT LATER. OTHER EVENTS AROUND NIH, THE PORTER BUILDING REFERRED TO AS PORTER 2, THE SECOND BUILDING IN THE PORTER COMPLEX, WAS DEDICATED BACK ON MARCH 31ST WITH A SCIENTIFIC SYMPOSIUM. YOU SEE HERE FRANCIS COLLINS AND JOHN PORTER POSING IN FRONT OF THE BUILDING, THEN YOU SEE THE NEW BUILDING BELOW. IT PHYSICALLY IS JUST A WONDERFUL SPACE: STATE OF THE ART IN MANY WAY, BUT BEYOND THE PHYSICIANCALITY OF THE BUILDING, WHAT REALLY IS EXEMPLARY ABOUT IT, AS IS TRUE IN PORTER 1, THE IDEA OF HAVING A THEMED AREA THAT REALLY WORKS ACROSS NIH INSTITUTES SO THAT PEOPLE ARE GROUPED NOT BY INSTITUTE BUT BY INTELLECTUAL INTERESTS, AND ARE ABLE TO WORK CLOSELY TOGETHER THROUGH THIS CO-HOUSING. I'M VERY HAPPY TO SAY THAT NICHD'S INTRAMURAL PROGRAM IS NOT ONLY IN THE BUILDING BUT ONE OF THE LARGER FOOTPRINTS WITHIN THE BUILDING, SO IT'S GREAT FOR OUR STAFF BOTH IN TERMS OF AGAIN JUST THE PHYSICAL LAYOUT, ET CETERA, BUT ALSO THE ABILITY TO WORK ACROSS INSTITUTES IN A WAY THAT REALLY, I THINK MANY OF US THINK IS A MODEL FOR THE NIH INTRAMURAL PROGRAM IN GENERAL. SOME THINGS OF WHICH YOU ARE PROBABLY AWARE, AND IF NOT, WE WANT YOU TO TO BE AWARE, THAT IS THE NEW RESUBMISSION POLICY. AS MANY OF YOU WILL RECALL SEVERAL YEARS AGO, WE CHANGE THE RESUBMISSION POLICY AT NIH, AND PERHAPS SURPRISINGLY TO SOME FOLKS, WE WERE ACTUALLY LISTENING TO THE EXTRA MURAL COMMUNITY'S EXPERIENCE WITH THIS AND GAUGING HOW SUCCESSFUL IT WAS. IT WAS AN EXPERIMENT WHICH HAD SOME SUCCESS BUT NOT COMPLETE SUCCESS. THE REAL SUCCESS, I THINK, IN THE POLICY IT HAS IN PLACE THE LAST SEVERAL YEARS, WAS THAT WE WERE ABLE TO SHRINKEN SUBSTANTIALLY THE PERIOD OF TIME FROM ACTUAL SUBMISSION OH TO RECEIVING THE MONEY. THAT WAS IMPORTANT BECAUSE THAT TIME KEPT GETTING LONGER AND LONGER AND BY THE TIME FOLKS GOT THEIR MONEY, THE OFTEN THE ORIGINAL GRANT APPLICATION WAS OUTDATED EVEN. SO THIS WAS IN NO ONE'S INTEREST SO TRYING TO SHRINK THAT TIME WAS VERY SUCCESSFUL. HOWEVER, LAS VEGAS A LOT OF FRUSTRATION IF YOU TALK TO DR. COLLINS OR DR. ROCKY, THE HEAD OF NIH EXTRAMURAL PROGRAMS, THE COMPLAINT THEY HEARD MOST FREQUENTLY BY FAR FROM THE EXTRA MURAL COMMUNITY WAS THE INABILITY TO RESUBMIT AFTER THE A1, SO AFTER A SECOND APPLICATION FOR THE SAME APPLICATION, THE INABILITY TO SUBMIT THE SAME IDEA ESSENTIALLY FURTHER, THAT IT REALLY HAD TO BE A NEW IDEA TO GET ACROSS THE THRESHOLD AND IT WAS FELT THIS WAS NOT FAIR TO PEOPLE DEVELOPING IDEAS. PERHAPS, PARTICULARLY UNFAIR TO EARLY STAGE INVESTIGATORS, SO HAVING LISTENED TO THAT, WE ARE CHANGING THE RESUBMISSION GUIDELINES, SO HOW IT WORKS NOW IS THERE IS THE A.O., THE ORIGINAL APPLICATION, THEN IF IT DOES NOT GET FUNDED, PEOPLE MAY SUBMIT AN A1 OR REVISED APPLICATION. IF THAT DOES NOT GET FUNDED, PEOPLE THEN MAY RESUBMIT THE SAME IDEA BUT AS A NEW APPLICATION: THAT MEANS WHILE THEY CAN CERTAINLY TAKE INTO ACCOUNT THE CRITIQUES THEY GOT AND REVISE ACCORDING TO THAT, IN THE RESUBMISSION, IT'S A NEW APPLICATION SO ONE WOULD NOT REFER TO THIS REVIEWER SAID THIS AND WE HAD DONE THAT KIND OF THING, ET CETERA, AND IT MEANS THERE WAS A GROUP AT NIH THAT WAS HAVING TO LOOK AT ALL OF THESE TO SAY, WELL, GEE, IS THIS SUBSTANTIALLY DIFFERENT ENOUGH FROM THE ORIGINAL APPLICATION THAT YOU CAN DO THIS AGAIN? THAT WON'T HAPPEN ANYMORE. IT WILL BE UP TO THE GRANT APPLICANT TO DECIDE WHETHER THEY WANT TO KEEP RESUBMITTING ESSENTIALLY THE SAME IDEA IN NEW FORM OR NOT. THAT POLICY IS NOW IN PLACE AND THE GRANTS THAT YOU ALL WILL BE LOOKING AT IN CLOSED SESSION TODAY HAVE NOT BEEN THROUGH THAT, BUT THE ONES YOU WILL BE SEEING IN THE FUTURE WILL HAVE BEEN THROUGH THAT POLICY. OTHER THINGS THAT ARE HAPPENING IN TERMS OF ENHANCING REPRODUCIBILITY OF RESULTS, THIS HAS BEEN A TOPIC OF SOME GREAT INTEREST AND APPROPRIATELY. GREAT INTEREST IN SCIENTIFIC COMMUNITY, GREAT INTEREST IN CERTAINLY THE SCIENTIFIC LITERATURE, BUT ALSO TO SOME DEGREE IN THE LAY PRESS, AND IT IS SOMEWHAT DISTRESSING, THE AMOUNT OF NIH-FUNDED RESEARCH THAT CANNOT BE REPRODUCED PACEICALLY BASICALLY, AND WE REALLY WANT TO THINK MORE ABOUT THE SUBTLE REASONS FOR THIS, ET CETERA, SO LARRY TABAK, THE PRINCIPAL DEPUTY DIRECTOR OF NIH, HAS REALLY TAKEN THE LEAD ON THIS. HE AND FRANCIS WROTE THIS PIECE TOGETHER THAT APPEARED IN NATURE A FEW MONTHS AGO, AND THERE'S BEEN A LOT OF REACTION TO THAT PIECE AND AGAIN STRESSES IT'S NOT UP TO THE NIH ALONE TO DO SOMETHING ABOUT THIS. THE FEEDBACK HAS BEEN FROM A REAL RANGE OF FOLKS. THE REACTION IN GENERAL HAS BEEN SUPPORTIVE TO THE VIEWS THEY EXPRESS IN THIS, THAT PART OF WHAT HAS COME UP IS THE IDEA THAT THERE REALLY NEEDS TO BE DEDICATED FUNDING FOR APPLICATION STUDIES. WE OF COURSE TEND NOT TO FUND VERY OFTEN REPLICATION STUDIES. THEY'RE AFTER ALL JUST REPLICATION STUDIES. BUT UNLESS YOU REPLICATE, HOW DO YOU KNOW IN FACT THE ORIGINAL DATA IS CORRECT AND REPRODUCIBLE. SO IT'S KIND OF IMPORTANT SO WE NEED TO PROBABLY BE THINKING MORE ABOUT THAT, THAT THERE IS ACTUALLY A SCIENCE OF REPRODUCIBILITY AND AS SCIENTISTS, WE SHOULD BE UTILIZING THAT MORE, ET CETERA. THERE'S BEEN LOTS OF STAKEHOLDER ENGAGEMENT TO FURTHER KIND OF MATURE HINGING I THINKING IN THIS AREA, ET CETERA. A LOT OF MEETINGS HAVE ALREADY BEEN CONDUCTED, MORE THAT ARE ON TAP. THERE HAVE BEEN PARTICULAR DISCUSSIONS WITH A NUMBER OF JOURNALS BUT PARTICULARLY WITH NATURE AND SCIENCE REGARDING THEIR ROLE IN ALL OF THIS, OPTIONS IN TERMS OF PUBLICATIONS IN TERMS OF ASSURING REPRODUCIBILITY, ET CETERA, AND THERE WILL BE FOLLOW-UP WORKSHOPS TO COME. SO THIS IS TRULY AN ONGOING PROCESS HERE. ENHANCING THE NIH BIOSKETCH. SO THIS GREW OUT OF A GENERAL CONCERN AROUND NIH, SOME OF IT FROM STAFF, SOME OF FROM VARIOUS INSTITUTE LEADERSHIP, SOME OF IT FROM EXTRAMURAL RESEARCHERS AND CERTAINLY SOME OF IT COMING FROM STUDY SECTIONS, THAT EVERYONE RECOGNIZES THE PAST PERFORMANCE AS A VERY IMPORTANT PART OF REVIEW, THAT IT'S A GOOD INDICATOR, NOT A PERFECT ONE BUT A GOOD INDICATOR -- BUT A FEELING THAT THE BIOSKETCHES CURRENTLY PUT TOGETHER IS NOT REALLY ALWAYS A VERY GOOD RENDITION OF WHO THE APPLICANT IS AND WHAT THEY'VE DONE. THAT THERE TENDS TO BE AN OVERRELIANCE ON THE IMPACT FACTOR OF THE JOURNAL IN WHICH THINGS APPEAR, WHICH IS SOMETIMES REFERRED TO AS CNS OR SINGLE WORD JOURNAL DISEASE FOR CELL, NATURE, SCIENCE, THAT IT UNLESS IT APPEARS IN CELL, NATURE, SCIENCE, WHY DID YOU BOTHER EVEN WRITING IT UP, THAT THIS CAN BE WORSENED BY REVIEWER BEHAVIOR, CERTAINLY NONE OF YOU AROUND THE TABLE, SOME REVIEWERS WHO DON'T ACTUALLY READ THE CITED WORK BUT JUST SEE WHERE IT APPEARS, AND DON'T REALLY PARTICULARLY IN THE AREA OF TEAM SCIENCE, I'M NOT RECOGNIZING THE CONTRIBUTION OF THE PERSON TO WHAT HAPPENS. SO THE IDEA IS TO TRY TO COME UP WITH AN APPROACH THAT BETTER EMPHASIZED THE APPLICANT'S OWN PERSONAL CONTRIBUTION INSTEAD OF SIMPLY WHERE DID SOMETHING APPEAR, WHERE DID YOU TRAIN KIND OF THING, WHAT HAVE YOU BEEN ACTUALLY CONTRIBUTING TO SCIENCE. SO THE IDEA IS TO REPLACE THE 15 PEER REVIEWED PUBLICATIONS WITH A NARRATIVE UP TO THE APPLICANT TO DESCRIBE WHAT THEY SEE AS THEIR FIVE MOST SIGNIFICANT CONTRIBUTIONS TO SCIENCE. AND TO LEAVE THAT TO THE APPLICANT TO DESCRIBE WHAT DO THEY THINK OVER THEIR CAREERS, WHICH COULD BE QUITE LENGTHY OR OBVIOUSLY QUITE SHORT, ARE THEIR MOST SIGNIFICANT CONTRIBUTIONS. THAT WOULD INCLUDE BACKGROUND INFORMATION, THE MAJOR FINDINGS OF THE WORK, AND THE ROLE OF THE APPLICANT IN THAT WORK. SO IT DOESN'T MATTER WHETHER YOU'RE FIRST AUTHOR, LAST AUTHOR OR AUTHOR NUMBER SEVEN, WHAT DID YOU ACTUALLY CONTRIBUTE TO THIS EFFORT? WE STARTED THIS AS SORT OF AN EXPERIMENT THIS SUMMER, SOME SELECTED RFAs ARE DOING THIS TO HELP US REALLY HOW DO WE PUT THIS ALL TOGETHER, DEVELOP INSTRUCTIONS SO THAT IT WORKS FOR PEOPLE, IT WILL BE LAUNCHED THIS FALL, APPLICATION AS YOU SEE FOR FISCAL YEAR 2016 FUNDING WILL BE USING IT, ET CETERA CETERA. SO AGAIN, WE WILL BE ITERATING THE INSTRUCTIONS BUT THE BASIC IDEA IS SOMETHING THAT WE REALLY PLAN TO USE, THOUGH AGAIN, AS WAS THE CASE BEFORE WITH THE RESUBMISSION POLICY, WE WILL BE CAREFULLY MONITORING IT TO SEE HOW IT WORKS. ONE POTENTIAL CONCERN THAT SOME FOLKS HAVE VOICED IS WILL IT PUT EARLY STAGE INVESTIGATORS AT SOME KIND OF DISADVANTAGE SINCE THEY WON'T HAVE HAD THE YEARS TO TO DEVELOP FIVE AREAS OF INTEREST IN THE SAME WAY. SO THAT'S SOMETHING WE'LL BE MONITORING CAREFULLY, OF COURSE, EARLY STAGE INVESTIGATORS GRANTS ARE LOOKED AT IN A SEPARATE POOL ANYWAY, BUT HA IS SOMETHING WE'LL BE MONITORING ALONG WITH EVERYTHING ELSE TO SEE WHETHER THERE MAY BE ANY UNANTICIPATED CONSEQUENCES. ANOTHER AREA THAT'S RECEIVED SOME ATTENTION IN THE PRESS RECENTLY HAS BEEN SEX DIFFERENCES IN PRECLINICAL STUDIES. JUST LAST MONTH, DR. COLLINS AND JENEANE CLAYTON, WHO IS THE DIRECTOR OF OUR OFFICE OF RESEARCH IN WOMEN'S HEALTH, CO-AUTHORED A PIECE IN NATURE ABOUT WAYS THAT NIH IS SEEKING TO ADDRESS SEX DIFFERENCES IN RESEARCH AND IN THAT, THEY NOTE THAT NIH WILL BE DEVELOPING NEW POLICIES TO EXPAND THE CONSIDERATION OF SEX DIFFERENCES IN RESEARCH STUDIES, BOTH IN TERMS OF USING ANIMAL MODELS AND CELLS, LOOKING AT THAT. THE NEW POLICIES WILL BE ROLLING OUT THIS FALL, AND WILL INVOLVE A NUMBER OF CHANGES IN THE WAY WE DO BUSINESS TO MAKE SURE THAT WE REALLY ARE APPROPRIATE SCIENTIFICALLY TAKING INTO CONSIDERATION SEX DIFFERENCES NOT JUST IN CLINICAL STUDIES BUT CLEARLY THERE ARE SOME DIFFERENCES OF IMPORT IN TERMS OF PRECLINICAL STUDIES. ANY QUESTIONS, AND LET ME JUST PAUSE FOR A MOMENT, ANY QUESTIONS ABOUT ANY OF THE SORT OF NIH POLICIES, ALL OF WHICH ARE SORT OF IN TRANSIT FROM IDEA TO ACTUAL EXECUTION AT THIS POINT? I WOULD INVITE YOU AGAIN, I SHOULD STRESS THE NEW MEMBERS, IS NOT JUST TO PROVIDE ADVICE TO NICHD BUT TO THE WIDER NIH, SO AS YOU'RE EXPERIENCING THESE THINGS, AS YOUR COLLEAGUES ARE EXPERIENCING THIS, FEEL FREE TO EMAIL US, OTHERWISE CONTACT US WITH YOUR IMPRESSION OF HOW THESE THINGS ARE WORKING AND IN PARTICULAR MAYBE ABOUT HOW THEY'RE NOT WORKING. YOU REALLY ARE OUR EYES AND EARS IN A SPECIAL WAY, SO FEEL FREE TO GIVE US INPUT ABOUT THESE. SO SOME NEWS FROM THE NIH, OBVIOUSLY WITH YVONNE'S DEPARTURE A LITTLE EARLIER THAN SHE HAD PLANNED, WE'RE VERY HAPPY THAT WE ALREADY HAD LAUNCHED THE SEARCH FOR A DEPUTY DIRECTOR, THE ANNOUNCEMENT CLOSED IN MARCH, THE SEARCH IS WELL UNDERWAY. WE'RE HOPEFUL TO HAVE A NEW DEPUTY DIRECTOR IN PLACE BY EARLY FALL. WE'LL SOON EXACTLY WHAT THE TIME OF THAT IS. WE DECIDED THAT SINCE IT'S A RELATIVELY SHORT PERIOD UNTIL WE EXPECT TO HAVE A NEW DEPUTY DIRECTOR IN PLACE, RATHER THAN APPOINTING AN ACTING DEPUTY DIRECTOR, WE WOULD JUST ALL OF US IN VARIOUS ROLES IN LEADERSHIP, ET CETERA, WOULD STEP UP OUR ACT, WORK A LITTLE HARDER, AND CARRY ON THAT WAY RATHER THAN BRINGING SOMEBODY NEW ON BOARD TO BE ACTING DIRECTOR FOR JUST A FEW MONTHS. WE ARE ALSO AT THE SAME TIME WELL UNDERWAY, THE SEARCH FOR A NEW DIRECTOR FOR THE NATIONAL CENTER FOR MEDICAL REHABILITATION RESEARCH. THAT ANNOUNCEMENT DOES NOT CLOSE UNTIL JUNE 1ST, AND ACTUALLY THAT SLIDE SHOULD BE UPDATED. IT'S BEEN MOVED TO -- IT WAS JUNE 1ST, EXCUSE ME, JUNE 1ST TO CLOSE. THE SEARCH COMMITTEE, I CAN TELL YOU, HAS BEEN DOING A WONDERFUL JOB, AND I CAN TELL YOU HAVING HAD UNOFFICIAL DISCUSSIONS WITH THE SEARCH COMMITTEE, THEY'RE QUITE PLEASED WITH BOTH THE QUANTITY AND QUALITY OF APPLICANTS FOR NCMRR AND ARE QUITE OPTIMISTIC THAT WE WILL HAVE A VERY GOOD PERMANENT LEADER IN PLACE IN THE NOT TOO DISTANT FUTURE. YOU'LL BE HEARING MORE ABOUT THAT CERTAINLY BY OUR NEXT MEETING. NEW APPOINTMENTS HERE, ROBERT TAMBURO, MD, BACKGROUND IN PEDIATRIC CRITICAL CARE AND TRAUMA, HAS JOINED THE PEDIATRIC CRITICAL CARE RESEARCH NETWORK. HE COMES TO US FROM PENN STATE WHERE HE SELFED AS ASSOCIATE YACHT PROFESSOR IN PEDIATRICS, WONDERFUL ADDITION IN TERMS OF BOTH EXPERTISE AND EXPERIENCE FOR US IN GENERAL, PARTICULARLY FOR THIS NEW BRANCH. I'M ALSO HAPPY TO ANNOUNCE LISA HALLBERTSON HAS BEEN SELECTED AS CHIEF OF THE GYNECOLOGIC HEALTH AND DISEASE BRANCH. SHE COMES TO US FROM U.T. SOUTHWESTERN, WHERE SHE IS A PROFESSOR OF OBSTETRICS AND GYNECOLOGY, AND WE'RE VERY LUCKY TO HAVE ATTRACTED HER AS WELL, OBVIOUSLY BEING THE BRANCH CHIEF OF A NEW BRANCH BRINGS WITH IT A CERTAIN BOTH JOY AND CHALLENGE, SO WE WELCOME LISA TO BOTH OF THOSE. SOME RETIREMENTS THAT WE'RE KIND OF BITTERSWEET ANNOUNCEMENTS, MARY LOU OSTER-GRANITE, WHO HAS BEEN IN FEDERAL SERVICE ABOUT 20 YEARS, HARD TO THINK ABOUT THAT, AND HAS REALLY BEEN SO IMPORTANT TO A LOT OF OUR WORK IN INTELLECTUAL AND DEVELOPMENTAL DISABILITIES BRANCH, CHAIRED A NUMBER OF OUR PROGRAMS, WILL BE RETIRING AT THE END OF THIS MONTH AND WE'LL MISS HAVING HER AROUND FOR A NUMBER OF REASONS. ANOTHER PERSON WE WILL MISS, LYNNEEMOFENSON WILL BE RETIRING AFTER A QUARTER CENTURY OF SERVICE TO US AND CLEARLY HAS MADE VERY IMPORTANT CONTRIBUTIONS NOT JUST TO THE BRANCH BUT CLEARLY TO THE UNDERSTANDING OF MATERNAL AND PEDIATRIC HIV AND AIDS, PARTICULARLY NOT JUST OUR UNDERSTANDING BUT REALLY CHANGES IN TERMS OF INTERVENTIONS AND MAKING COMPLETE AND DIFFERENT LIVES FOR PEOPLE AROUND THE GLOBE, BOTH MOTHER AND CHILD INVOLVED IN HIV AND AIDS. SO SOMEBODY ELSE THAT WE WILL BE MISSING AFTER MANY YEARS OF BEING PART OF THE FAMILY. WE HAVE A NUMBER OF RECRUITMENTS ONGOING. PARTLY BECAUSE OF SOME OF THE RETIREMENTS, BUT FOR OTHER REASONS YOU SEE THEM HERE. CLEARLY AMONGST OTHERS, YOU'LL SEE HERE CHIEF MATERNAL PEDIATRIC INFECTIOUS DISEASE BRANCH, WE NEED TO SELECT SOMEONE, I'M NOT SURE TO REPLACE LYNNE IS QUITE RIGHT TERM, BUT TO FOLLOW LYNNE, NO ONE WOULD REALLY REPLACE HER. AND YOU SEE THESE OTHER OPENINGS WE HAVE CURRENTLY. OTHER OH THINGS IN TERMS OF STAFF, IT'S NICE TO BE ABLE TO NOTE THE THAT STEVE HIRSCHFEHD, WHO IS OUR ASSOCIATE DIRECTOR FOR CLINICAL HEALTH WILL BE RECEIVING THE PHYSICIAN OF THE YEAR AWARD FROM THE USPHS, U.S. PHYSICIANS PROFESSIONAL ADVISORY COMMITTEE LATER THIS MONTH, AND IT'S VERY NICE TO HAVE STEVE RECOGNIZED ACROSS THE FEDERAL GOVERNMENT AS THE RESEARCH PHYSICIAN OF THE YEAR. SPEAKING OF THE NATIONAL CHILDREN'S STUDY, MANY OF YOU WILL KNOW THAT WE'RE ON SEMI TENTER HOOKS BECAUSE THE COUNCIL PANEL THAT HAS BEEN LOOKING AT THE NCS WILL BE RELEASING ITS REPORT ON THE NCS LATER THIS MONTH. WHILE WE ARE WAITING FOR THAT, WE'RE CERTAINLY MOVING AHEAD WITH FISCAL YEAR 14 ACTIVITIES INCLUDING THE VANGUARD STUDY, PIET LOT STUDY AND VERY BASIC PREPARATIONS FOR THE MAIN STUDY WE'RE NOT FOR LOTS OF REASONS LAUNCHING THE MAIN STUDY UNTIL WE'RE ABLE TO GET THIS STUDY AND WE'LL HAVE A PUBLIC WEBINAR TO GET MORE INPUT AND COMMENT TO HELP FEED INTO THE RE-EVALUATION WE'LL BE DOING OVER THE SUMMER BASED UPON THE INPUT FROM THE INSTITUTE OF MEDICINE, OUR VERY FRESH LOOK OURSELVES AT THE WAY THE NCS IS STRUCTURED, ET CETERA, AS WELL AS PUBLIC INPUT TO FIGURE OUT WHAT IS THE BEST WAY TO MOVE FORWARD WITH THIS. SO WE WILL BE, MANY OF US, VERY INVOLVED, AND WE'VE HAD A LOT OF INVOLVEMENT, OF COURSE, WITH THE OFFICE OF THE DIRECTOR OF NIH IN TERMS OF THIS. NICHD IS THE LEAD INSTITUTE FOR THIS BUT IT IS NOT OURS ALONE SO WORKING VERY CLOSELY WITH THE OFFICE OF THE DIRECTOR AND OTHER INSTITUTES TO SEE HOW SHOULD WE BEST PROCEED WITH THE NATIONAL CHILDREN'S STUDY. IN TERMS OF THE NATIONAL CENTER FOR MEDICAL REHABILITATION RESEARCH, YOU KNOW WE'VE BEEN IMPLEMENTING SOME CHANGES IN THE WAY THAT WORKS. I THINK THE THINGS I WOULD HIGHLIGHT IS THAT WE TRULY HAVE RALPH NITKIN WHO JUST CAME IN AS THE ACTING DIRECTOR. RALPH'S DOGGED DETERMINATION, I WOULD SAY, WE'VE MADE SOME REAL HEADWAY IN TERMS OF A COUPLE THINGS. ONE IS TRULY RE-ENERGIZING THE TRANSNIH REHABILITATION COORDINATING COMMITTEE, WHICH IS SOMETHING THAT IN RECENT YEARS, TO BE HONEST, EXISTED LARGELY ON PAPER AND NOT SO MUCH IN TRUE REALLY COORDINATING RESEARCH ACROSS THE NIH. IT REALLY IS RE-ENERGIZED, REVITALIZED. AS PART OF THAT, THERE'S BEEN AN AD HOC WORKING GROUP RP SENTING BASICALLY STAFF FROM THE INSTITUTES MOST INVOLVED IN MEDICAL REHABILITATION RESEARCH TO REALLY FIGURE OUT THE NUTS AND BOLTS OF HOW DO WE BOTH INCREASE COORDINATION AND HOW DO WE BEST USE THIS 6.5% OF OUR -- NICHD'S EXTRAMURAL FUNDS THAT WE HAVE NOW ALLOCATED AS A SORT OF SEPARATE BUDGET TO NCMRR, HOW DO WE BEST DO THIS GOING FORWARD, AND WE HAD A PARTICULARLY USEFUL MEETING, AS A MATTER OF FACT, JUST YESTERDAY WHERE WE WERE DRK A NUMBER OF INSTITUTE DIRECTORS AS WELL AS THIS AD HOC WORKING GROUP TO TALK ABOUT RECENT DEVELOPMENTS AND HOW DO WE MOVE FORWARD WITH THIS, AND I THINK WE'RE SEEING SOME REAL PROGRESS. I WOULD -- WE WILL SEE, I THINK, A WIDER RANGE OF SOME RFAs COMING FORWARD WITH INCREASED SUPPORT FROM SOME OF THE OTHER INSTITUTES TO MARK -- TO GO ALONG WITH OUR INCREASED SUPPORT OF THESE KINDS OF ACTIVITIES. SO YOU'LL BE HEARING MORE DETAIL OF THAT OVER THE NEXT FEW MONTHS, BUT I THINK WE'RE MAKING SOME REAL PROGRESS THERE. MEETINGS OF NOTE OVER THE LAST FEW MONTHS SINCE WE LAST MET, ON FEBRUARY 6, A NUMBER OF US WENT TO SPELLMAN COLLEGE TO REALLY BE A PART OF AND HELP THEM CELEBRATE THEIR WELLNESS REVOLUTION. FOR THOSE THAT DON'T KNOW ABOUT IT, IT'S QUITE A COURAGEOUS, I THINK, MOVE ON THE PART OF SPELLMAN AND ITS PRESIDENT TO BASICALLY SAY WE ARE GOING TO STOP DOING INTERCOLLEGIATE ATHLETICS. THAT'S NOT REALLY ABOUT PREPARING PEOPLE FOR LIFE AS MUCH AS REALLY IN A VERY HOLISTIC SENSE STRESSING WELLNESS. SO IT'S NOT THAT EXERCISE AND SPORTS AREN'T IMPORTANT. THEY R WHAT'S IMPORTANT IS HOW THEY CONTRIBUTE TO YOUNG WOMEN'S LIFE, NOT HOW THEY CONTRIBUTE TO ALUMNI GIVING BECAUSE OUR TEAM HAS WON SOME GAMES OR SOMETHING. SO RESOURCES BY WHICH THEY BOTH MEAN MONEY AND ATTENTION TO TRY TO CREATE A CLIMATE AND A PROGRAM ON CAMPUS FOCUSED ON UNDERGRADUATES BUT ALSO INCLUDING FACULTY STAFF AND SOME DEGREE ALUMNI TO REALLY TALK ABOUT HOW DO YOU INCULCATE IN THE FORMATIVE YEARS, OBVIOUSLY, A LIFESTYLE OF WELLNESS. AND IT'S A VERY INTERESTING PROGRAM, NID I NICHD HAS BEEN SUPPORTING IT IN VARIOUS WAYS. YOU CAN SEE THE PICTURE OF ALL OF US WHO WENT, WE TOOK ADVANTAGE OF THE OPPORTUNITY TO MEET WITH A LOT OF YOUNG WOMEN FROM SPELLMAN WHO ARE INTERESTED IN PURSUING VARIOUS KINDS OF FUTURE CAREERS IN THE BIOMEDICAL SCIENCES AND RESEARCH, CLINICIANS, ET CETERA. SO IT WAS A WONDERFUL TIME THAT I THINK WE ALL ENJOYED VERY MUCH. AND WE'RE VERY IMPRESSED WITH WHAT THEY'RE TRYING TO ACCOMPLISH. LATER IF FEBRUARY, THE NICHD INTRAMURAL PROGRAM HAD ITS STRATEGIC PLANNING RETREAT. I THINK IT'S FAIR TO SAY HAD A VERY LIFE O LIVELY AND INTERESTING DISCUSSION. YOU KNOW OUR INTRAMURAL PROGRAM HAD A BLUE RIBBON PANEL LOOK AT IT LESS THAN A YEAR AGO, REALLY, AND GIVE A REPORT. WELL, THAT HAPPENED TO -- WE DIDN'T KNOW AT THE TIME, TO SORT OF PREDATE A LARGER EFFORT ACROSS THE INTRAMURAL PROGRAM AT NIH AND GOING TO LOOK AT THE FUTURE OF THE ENTIRE INTRAMURAL PROGRAM AT NIH. WE'RE LOOKING 10 TO 15 YEARS IN THE FUTURE, HOW SHOULD WE BE RECRAFTING IF AT ALL, WE THINK PROBABLY WE SHOULD, RECRAFTING THE INTRAMURAL PROGRAM ACROSS THE NIH SO THAT IT CONTINUES TO BE EXTREMELY PRODUCTIVE SO IT CONTINUES TO BE REALLY A COLLEAGUE TO THE EXTRAMURAL PROGRAM, STRESSING THOSE THINGS THAT ARE BEST DONE IN THE INTRAMURAL ENVIRONMENT BUT ALSO WORKING CLOSELY, MORE CLOSELY, WE WOULD HOPE, WITH THE EXTRAMURAL COMMUNITY, ET CETERA, SO THAT IS NOW ONGOING, A NUMBER OF YOU ARE PARTICIPATING IN A GROUP THAT'S HELPING US SORT OF ADAPT THE RECENTLY DEVELOPED NICHD PLAN TO FIT INTO THAT. I SHOULD ALSO TELL YOU THAT CONSTANTINE AND I SIT -- WE CHAIR A GROUP THAT'S BEEN PULLED TOGETHER AS PAR OF THE CLINICAL CENTER'S INPUT INTO THIS INTRAMURAL PROGRAM. THEY'VE PULLED TOGETHER A GROUP TO LOOK SPECIFICALLY AT PEDIATRIC RESEARCH AT THE CLINICAL CENTER. AND NICHD IS NOT THE ONLY PLAYER IN THAT BUT WE'RE A MAJOR PLAYER IN THAT, SO THINKING HOW WE CAN ADVANCE PEDIATRIC RESEARCH SPECIFICALLY IS ANOTHER PART OF THIS WHOLE EFFORT. OTHER MEETINGS ON MARCH 26TH, VERY INTERESTING WORKSHOP ON GROWING UP WITH DISORDERS OF SEXUAL DEVELOPMENT. WHICH AGAIN OTHER INSTITUTES ARE INTERESTED IN, BUT WE HAVE A PARTICULAR INTEREST IN, AND THIS WAS A VERY USEFUL EXPLORATION OF THIS TOPIC THAT IS OFTEN CONTROVERSIAL, PARTLY BECAUSE YOU HAVE INDIVIDUALS, PARENTS, FAMILIES, CLINICIANS, RESEARCHERS WHO COME TO THIS NOT JUST FROM DIFFERENT PERSPECTIVES BUT FROM DEEPLY HELD CONFLICTING BELIEF SYSTEMS ALMOST ABOUT THIS. THIS WAS A REALLY USEFUL CONSTRUCTIVE MEETING WHERE PEOPLE WHO HAVE VERY DIVERGENT VIEWPOINTS REALLY DID LISTEN CAREFULLY TO EACH OTHER AND I THINK LEARNED SOMETHING ABOUT THE NUANCE OF THE OTHER SIDE, SO I THOUGHT IT WAS A VERY USEFUL DAY-LONG WORKSHOP. OTHER MEETINGS IN APRIL, MILITARY -- SPECIAL HEALTHCARE NEEDS AND THEIR FAMILIES TO HELP US BETTER UNDERSTAND THIS TRULY UNDERSTUDIED AREA. AGAIN, I THOUGHT A VERY USEFUL WORKSHOP IN WHICH WE HAVE A SPECIAL ROLE BUT THERE ARE A NUMBER OF OTHER NOT JUST ICs BUT OTHER FEDERAL AGENCIES THAT ARE CLEARLY VERY INTERESTED IN THIS, INCLUDING OBVIOUSLY DEPARTMENT OF DEFENSE AND OTHERS. ALSO IN APRIL, THE PEDIATRIC TRAUMA AND CRITICAL ILLNESS BRANCH HELD ITS STRATEGIC PLANNING WORKSHOP TO HELP VALERIE AND HER COLLEAGUES DEVELOP A PLAN TO MOVE FORWARD FOR THE NEW BRANCH, VERY USEFUL. FOLLOWING THAT THE NEXT DAY, TAKING ADVANTAGE OF SOME FOLKS WHO WERE GOING TO BE IN TOWN FOR THAT PRIOR MEETING, WE HAD A VERY USEFUL WORKSHOP ON UNINTENTIONAL INJURY PREVENTION RESEARCH NEEDS, WHICH REALLY FOCUSED ON TWO AREAS, HEAD TRAUMA FROM SPORTS AND ALSO HOUSEHOLD INJURIES AND HOW CAN WE MOVE FORWARD PARTICULARLY AT PREVENTION RESEARCH AGENDA AND NOT JUST RESEARCH BUT ACTUALLY APPLICATION OF WHAT WE KNOW IN THOSE TWO AREAS. VERY IMPORTANT ONES OBVIOUSLY. LOTS OF MEETINGS. EVEN MORE MEETINGS. IN MAY, THE BIOMARKERS IN NUTRITION FOR DEVELOPMEN DEVELOPMENT TO DEVELOP A ROAD MAP TO BETTER DETERMINE HOW TO USE THE RECOMMENDED BIOMARKERS BOTH ON AN INDIVIDUAL LEVEL AND ON A POPULATION HEALTH LEVEL. LATER IN MAY, THE OUTREACH MEETING WAS ANOTHER ONE WHERE THE POWER OF THE CONVENER OF NICHD OF NIH IS INCREDIBLY USEFUL. IN TIMES OF LIMITED BUDGETS, IT'S OFTEN A VERY BIG BANG FOR OUR BUCK. IN TERMS OF BRINGING TOGETHER AS WE DID IN THE EARLIER WORKSHOP I MENTIONED, AND THIS ONE, GROUPS THAT DON'T OFTEN SEE EYE TO EYE. BASICALLY TWO DIFFERENT COMMUNITIES, BOTH OF WHICH WE'RE DEEPLY TIED TO, MISSIONS WHO WE ARE DEEPLY DEVOTED TO. ONE IS REALLY TRYING TO OPTIMIZE BREAST FEEDING AND THE OTHER ONE IS TRYING TO MAXIMIZE SAFE SLEEP. THERE ARE TIMES WHERE FOLKS WHO IDENTIFY THEMSELVES A MEMBER OF ONLY ONE OR THE OTHER OF THAT COMMUNITY SEE THINGS VERY DIFFERENTLY IN TERMS OF THE INTERACTION OF BREAST FEEDING AND SAFE SLEEP IN TERMS OF WHERE A MOTHER -- WHERE IN THE ROOM THE MOTHER IS GOING TO BREAST FEED WHERE THE INFANT IS AT THIS TIME, ALL THOSE KINDS OF THINGS. AGAIN I THINK PART OF THE CONVENER WAS TO BRING THESE COMMUNITIES TOGETHER SO THEY COULD HEAR A NUANCED PRESENTATION WHICH IS SOMETIMES THE OTHER SIDE OF THE QUESTION AND TRY TO MOVE TOGETHER. IT WASN'T JUST US, HOW WE CAN BEST MOVE THIS FORWARD. THE NEXT DAY, THE NICHD DIVERSITY TASK FORCE HAD A MEETING TO TACKLE ISSUES HE PERTAINING TO SEVERAL PHASE DEVELOPING, IMPLEMENTING AND EVALUATING INITIATIVES ACROSS OUR NICHD RESEARCH PORTFOLIO. A VERY IMPORTANT ESH EU FOR NICHISSUE FOR NICHDFOR SURE, REGINA JAMES AND OTHERS WHO WERE IMPORTANT IN PULLING THIS TOGETHER, A VERY USEFUL MEETING TO TRY TO REALLY MOVE US FORWARD IN THIS. IN JUNE, THE MENTAL HEALTH -- DEVELOPMENTAL DISABILITIES RESEARCH CHALLENGES AND OPPORTUNITIES MEETING JUST EARLIER THIS WEEK, I'VE HEARD ONLY PRELIMINARY REPORTS SO FAR BUT THE ONES I'VE HEARD WERE VERY POSITIVE ABOUT HOW THIS WENT BECAUSE OBVIOUSLY MENTAL HEALTH AND INTELLECTUAL DEVELOPMENT IN DISABILITIES IS AGAIN HUGELY IMPORTANT TO US. WE HAD A MEETING ABOUT THE HUMAN PLACENTA PROJECT. ALL I'M GOING TO DO IS SHOW YOU A PHOTOT PHOTO TO SHOW YOU PEOPLE THAT CAME TO THE MEETING. THEY HAD AT LEAST TEMPORARILY NICE WEATHER, LONG ENOUGH TO TAKE A PHOTO. OTHER THINGS GOING ON AROUND NICHD ARE COMMUNICATIONS EFFORTS, I WANT TO HIGHLIGHT A COUPLE OF THINGS, ONE IS WE ARE REALLY INTENSIFYING OUR EFFORTS TO GET THINGS OUT IN SPANISH. IF YOU CARE ABOUT JUST HYPOTHETICALLY SAY CHILD HEALTH AND HUMAN DEVELOPMENT AND YOU ARE AN INSTITUTION IN THE UNITED STATES, HOW CAN YOU IN 2014 NOT HAVE THOSE THINGS YOU WANT TO TRANSMIT TO THE GENERAL PUBLIC NOT BE AVAILABLE IN SPANISH? THAT WOULD BE TO IGNORE THE MAKEUP OF OH OUR COUNTR OUR COUNTRY AT THI S POINT IN TIME, SO WE FEEL IT'S VERY IMPORTANT TO DO THIS, AND I WANT TO COMMEND CARRIE AND HER STAFF IN TERMS OF REALLY MOVING US FORWARD IN THIS AREA AND ALSO IN THE USE OF SOCIAL MEDIA. WE ARE TRYING TO GET WITH THE CENTURY AND WE'RE COLLABORATING WITH A NUMBER OF ORGANIZATIONS TO GET OUR MESSAGE OUT MORE EFFECTIVELY USING SOCIAL MEDIA. AGAIN, IF YOU CARE ABOUT CHILD HEALTH AND HUMAN DEVELOPMENT PART OF THE GROUP, YOU WANT TO REACH ARE PARENTS. YOU MAY HAVE NOTICED THE PARENTS ARE GETTING YOUNGER AND YOUNGER ALL THE TIME AS YOU'RE GETTING OLDER AND OLDER. THEY'RE USING OTHER MEDIA TO COMMUNICATE WITH EACH OTHER. WHAT WAS BIG A COUPLE OF YEARS AGO IS GONE TODAY, ET CETERA, SO WE NEED TO BE PART OF THAT WAVE IF WE'RE GOING TO REACH PARTICULARLY YOUNGER PARENTS. OTHER THINGS THAT ARE HAPPENING, THE GOOD NEWS, FOR THOSE OF YOU WHO DON'T KNOW WHY A LOT OF STAFF IS LAUGHING, WE WILL TELL YOU IN A MOMENT AS YOU SEE STAFF START CRYING. SO THE GOOD NEWS IS THAT WE HAVE A NEW HOME FOR OUR EXTRAMURAL PROGRAM, A NUMBER OF OTHER PARTS OF OUR INSTITUTE B400 EMPLOYEES, WILL BE MOVING INTO THIS LOVELY BUILDING WITH FOUNTAINS, NEARBY CAFETERIAS, A LARGE CONFERENCE ROOM WHERE, FOR INSTANCE, COUNCIL COULD BE MEETING, ALL KINDS OF A FITNESS CENTER THAT'S RIGHT ACROSS THE STREET AND IS AVAILABLE TO STAFF FREE OF CHARGE, ET CETERA, SO LOVELY AMENITIES, SOME VERY NICE THINGS, AND WE WILL BE MOVING THERE NEXT YEAR. SO WHAT DO WE DO UNTIL THEN? WHY DON'T WE JUST STAY WHERE WE ARE? FOR THOSE OF YOU WHO HAVEN'T HEARD, IT'S A LONG STORY, WHICH IS STILL SORT OF UNWINDING ITSELF. IT STARTED, WELL, IT STARTED WITH THIS, A FRIDAY LATE MORNING A COUPLE WEEKS AGO, STAFF WERE SITTING AT THEIR DESKS DOING IMPORTANT WORK LIKE GETTING READY FOR COUNCIL WHEN SUDDENLY THE GROUND SEEMED TO SHIFT AND MORE IMPORTANTLY THE BUILDING SHIFTED. NOW IN FACT THE GROUND HADN'T SHIFTED, THE BUILDING SIMPLY SHIFTED. PEOPLE HEARD LOUD NOISES, THEY COULD KIND OF FEEL THE BUILDING MOVING AROUND, SOME HAD SAID IT SETTLED, ET CETERA, AND QUICKLY NOTED CRACKS ON THE EXTERIOR OF THE BUILDING IN ONE AREA. SO WE EVACUATED, STAFF TOLD THEM TO GO HOME, AND THEN HAVE HAD A NUMBER OF VERY INTERESTING 1:00 PHONE CALLS WITH OTHER PARTS OF THE NIH THAT ARE AFFECTED. WE ARE THE MOST AFFECTED. WE HAVE 218 EMPLOYEES IN THIS BUILDING. THE OFFICE OF THE DIRECTOR OF NIH, STILL A LARGE NUMBER OF EMPLOYEES IN THE BUILDING, SO A NUMBER OF CALLS. IT SOMEWHAT AS WE WOULD SAY SLOWLY DEVELOPED THAT THIS HAD NOT HAPPENED JUST BECAUSE A COUPLE BOLTS HAD LET GO THAT HELD THE FACADE TO THE BUILDING. THE REASON WHY THIS HAD HAPPENED IS THAT THE STEEL COLUMNS SUPPORTING THE BUILDING IN THAT AREA HAD FAILED. THAT IN FACT THE BOTTOM OF IT HAD BEEN SITTING IN WATER LONG ENOUGH, HIDDEN BY THE CONCRETE SO NO ONE KNEW THAT, IN FACT, IT HAD CORRODED, IT HAD SETTLED BY AN INCH TO AN INCH AND A HALF, AND WHEN IT SETTLED, IT SHEARED THE PINS HOLDING THE FACADE, WHICH IS WHY THE FACADE CRACKED. SO IN FUTURE, I LEARNED SOMETHING THROUGH THIS PROCESS. IT WAS UNKNOWN TO ME AND I THINK LITTLE KNOWN AT THE NIH AS I'D NEVER EXACTLY HAD THIS SITUATION BEFORE. IT TURNS OUT THAT WHATEVER INSTITUTE HAS THE LARGEST -- THE GREATEST NUMBER OF EMPLOYEES IN THE BUILDING IS KIND OF THE CAPTAIN OF THE SHIP OR SOMETHING, SO THE STRUCTURAL ENGINEERS WHO ACTUALLY KNOW WHAT THEY'RE TALKING ABOUT, I HAVE TO SAY, DESCRIBE WHAT'S HAPPENING WITH THE BUILDING, AND THEN THEY TURN TO WHOEVER HAPPENS HYPOTHETICALLY TO BE THE HEAD OF THAT INSTITUTE THAT HAS THE MOST EMPLOYEES AND KIND OF SAY WELL, WHAT DO YOU WANT TO DO ABOUT IT? DO YOU WANT TO SEND THE STAFF BACK IN? WE THINK IT MIGHT BE OKAY, OR DO YOU NOT WANT TO SEND THE STAFF BACK IN? WELL LUCKILY, OF COURSE, THOSE OF US IN INSTITUTE LEADERSHIP OF NICHD HAVE INCREDIBLE ADVANCED DEGREES IN STRUCTURAL ENGINEERING AND OTHER KINDS OF APPLICABLE SCIENCE, SO WE ARE ABLE TO SAY NO WAY ARE WE PUTTING STAFF BACK IN THERE, THAT OUR FIRST CONCERN HAS TO BE STAFF SAFETY. WE'RE NOT PUTTING PEOPLE BACK IN THERE UNTIL WE HAVE A BERT UNDERSTANDING OF WHERE THE BUILDING IS. WELL, IT TURNED OUT IN THAT PART OF THE SCIENCE IT WAS DONE PRETTY WELL BECAUSE THIS MONDAY, THE COUNTY CONDEMNED THE BUILDING. SO AS OF THE MOMENT, NO ONE IS ALLOWED BACK IN THE BUILDING WHILE THE BUILDING LANDLORD AND HIS STRUCTURAL ENGINEERS FIGURE OUT WHAT THE MITIGATION STRATEGY MIGHT BE. WE ASSUME THAT MAY TAKE SOME PROLONGED PERIOD OF TIME SO WE ARE SCRAMBLING AROUND TRYING TO FIND TEMPORARY HOUSING FOR STAFF UNTIL WE CAN GET SOME MORE PERMANENT SOLUTION AND THEN EVENTUALLY THIS MOVE NEXT YEAR INTO THAT BUILDING THAT YOU SEE. WE HAVE HAD WONDERFUL SUPPORT FROM THE OFFICE OF RESEARCH FACILITIES, ORF, AT NIH, ET CETERA, IN DOING THIS, BUT IT IS A LENGTHY AND FOR STAFF PROBABLY FRUSTRATING EXPERIENCE. SO FOR THOSE OF YOU ON COUNCIL, I WANT YOU TO UNDERSTAND THAT YOUR STAFF, THEY ARE LITERALLY HOMELESS. THEY HAVE BEEN WORKING FROM THEIR OWN HOMES, SOME OF THEM, THEY HAVE BEEN WORKING FROM COFFEE SHOPS, SOME OF THEM. PORE SOME OFOR SOME OF THEM, WE ARE ABLE T O FIND SPACE IN OTHER BUILDINGS, BUT IT HAS BEEN EXTREMELY FRUSTRATING FOR EVERYONE INVOLVED TO NOT BE ABLE TO WORK IN THE GROUPS THEY'RE USED TO, ET CETERA. FOR THOSE IN STAFF WHO HAVEN'T HEARD, FOR THOSE WHO JUST WANT TO GET TOGETHER AND GET AN UPDATE AND MAYBE JUST GET TO SEE SOME OLD FRIENDS AGAIN, WE WILL HAVE -- NOBODY NEEDS TO ATTEND IT BUT WE'LL BE TALKING MORE ABOUT THIS. SO WE DON'T KNOW WHAT THE ULTIMATE ENDING OF THIS STORY IS. WE FEEL VERY GOOD WE'VE ALREADY MADE PLANS TO ABANDON THIS BUILDING AND MOVE SOMEPLACE ELSE, WISH OBVIOUSLY IT WAS A LITTLE BIT SOONER. WE'RE DOING THE BEST WE CAN UNTIL THEN BUT DO REALIZE THAT STAFF ON TOP OF ALL THE OTHER STRESSES AND KATHY WE TALKED A LITTLE MORE ABOUT THIS IN YOUR EXTRAMURAL REPORT HAVE BEEN LIVING IN A STRANGE TIME. LEGISLATIVE UPDATES TO TELL YOU ABOUT. OF COURSE WE ARE NOW WELL INTO FISCAL YEAR 2014 AND GETTING VERY MUCH PREPARED FOR FISCAL YEAR 2015. IT WAS IN JANUARY OF THIS YEAR THAT WE GOT THIS YEAR'S FISCAL BUDGET, WHICH REPRESENTED THE INCREASE OVER THE SEQUESTER BUDGET OF FISCAL YEAR 2013. OTHER BUDGET FOR IN YEAR IS ABOUT 1.28 BILLION OR ABOUT 2.7% MORE THAN THE LAST FISCAL YEAR. SO THAT GETS US SOMEWHAT BACK TO WHERE WE WERE BUT NOT BACK TO THE PRESEQUESTER 2012 BUT ROUGHLY ABOUT HALFWAY BACK. THE PRESIDENT'S 2015 BUDGET WAS RELEASED IN MARCH BUT AS ALWAYS, THE EVENTUAL BUDGET -- YOU'LL KNOW WHAT RELATION THAT WILL HAVE TO THE ACTUAL PRESIDENT'S BUDGET REQUEST. THE GOOD NEWS FOR US IS THAT THERE SEEMS TO BE SOME WILL OH TTOMOVE FORWARD A LABOR HHS BUDGET SOON, SO IN FACT NEXT WEEK THE SENATE COMMITTEE WILL BE MARKING UP THE LABOR RATE BILL. WHAT HAPPENS EVENTUALLY IN THE END GAME BETWEEN MAY AND THE FULL SENATE AND THEN THE HOUSE WE WILL SEE, BUT WE'RE HOPEFUL THAT WE MIGHT GET A BUDGET IN A TIMELY MANNER AND MAYBE EVEN A BUDGET SOMEWHAT BETTER, BUT IT'S VERY HARD TO PREDICT. OTHER THINGS HAVE BEEN HAPPENING HAPPENING, OTHER MEETINGS. MANY WILL HAVE READ IN THE LAY PRESS AGAIN GOOD ATTENTION TO A MEETING THAT WAS HELD I GUESS LAST FRIDAY -- LAST THURSDAY IN THE EAST ROOM OF THE WHITE HOUSE, AT WHICH THE PRESIDENT HIMSELF PRESIDED. AND THERE ARE MEETINGS AT THE WHITE HOUSE BUT THE PRESIDENT DOES NOT ATTEND ALL OF THOSE, WHICH HE DID AND THAT SENDS A SPECIAL MESSAGE. IT WAS AN INTERESTING MEETING. HEALTHY KIDS AND SAFE SPORTS CONCUSSION SUMMIT. THOSE TWO PARTS, THE HEALTHY KIDS AND SAFE SPORTS, IT'S AN UNWIELDY TITLE BUT A VERY WELL THOUGHT OUT MESSAGE. THE IDEA OF THIS MEETING WHICH BROUGHT TOGETHER ATHLETES, FAMILIES, INDIVIDUALS, ORGANIZATIONS, ET CETERA, COUPLE HUNDRED FOLKS IN ATTENDANCE, TO REALLY SPOTLIGHT THIS CLEARLY GROWING SOCIETAL CONCERN. YOU DIDN'T NEED THE WHITE HOUSE TO SAY THIS IS AN IMPORTANT TOPIC. IT CLEARLY IS AND SOCIETY HAS GATHERED THAT. BUT THE ATTEMPT WAS TO TRY TO ACHIEVE A SORT OF BALANCED THINKING AND METHOD, WHICH IS THAT SPORTS AND PHYSICAL ACTIVITY CAN BE DANGEROUS IN TERMS OF CONCUSSION. BUT SPORTS AND ORGANIZED TEAM ACTIVITIES ARE VERY IMPORTANT TO THE HEALTHY GROWTH OF CHILDREN. SO HOW DO WE ALLOW PARENTS AND CHILDREN AND YOUNG ADULTS TO MAKE DECISIONS ABOUT WHAT IS SAFE WITHOUT TELLING THEM, WELL, JUST PUT YOUR KID IN BUBBLE WRAP AND OPEN THE BUBBLE WRAP UP WHEN THEY'RE, I DON'T KNOW WHAT, 35 OR 40 AND EVERYTHING WILL BE OKAY. SO THIS WAS AN ATTEMPT TO HAVE A BALANCED MEASURE, PA PART OF WHAT IS HIGHLIGHTED THERE, I THIC I THINK IS IS ACTUALLY TRUE, WE DON'T HAVE ENOUGH RESEARCH TO TRULY BE ABLE TO INFORM VERY WELL MEANING PARENTS AND INDIVIDUALS ABOUT WHAT THEY SHOULD BE DOING. WE STILL DON'T UNDERSTAND CONCUSSION. WE CAN RECOGNIZE SEVERE, QUOTE-UNQUOTE, CONCUSSION. BUT WHAT ARE THE -- WHAT'S THE LOWER THRESHOLD OF CONCUSSION? AND WHY DO SOME INDIVIDUALS REACT VERY DIFFERENTLY TO THE SAME PHYSICAL INSULT AS OTHERS? REGARDLESS OF ALL THAT, WHAT IS THE SCIENTIFIC BASIS FOR MAKING DECISIONS ABOUT RETURN TO PLAY, RETURN TO SCHOOL, RETURN TO WHATEVER? CLEARLY WE DON'T YET HAVE ENOUGH DATA TO REALLY INFORM PEOPLE, SO I THOUGHT THIS WAS A USEFUL SEVERAL-HOUR MEETING TO TRY TO HIGHLIGHT THAT. COUNCILMEMBER RICK GREENWALD WAS ALSO THERE. RICK, I DON'T KNOW IF THERE'S ANYTHING YOU'D LIKE TO ADD ABOUT YOUR TAKE ON THE MEETING? >> SURE. IT WAS AN HONOR TO BE ONE OF THE REPRESENTATIVES OF THE SCIENTIFIC COMMUNITY AT THE WHITE HOUSE. WITH THIS SUMMIT, THE PRESIDENT CLEARLY ADDRESSED AND HIGHLIGHTED THE PUBLIC AWARENESS OF THIS ISSUE OF MILD TRAUMATIC BRAIN INJURY AND SPORTS RELATED CONCUSSIONS AT AN ALL-TIME HIGH. HE TALKED ABOUT HOW IT'S A PROBLEM THAT AFFECTS ADULTS, AFFECTS OUR WARRIORS, BUT THE FOCUS WAS ON KIDS. AND THIS WHOLE NOTION THAT WE KNOW WHAT WE KNOW BUT WE ALSO KNOW THAT WE DON'T KNOW A LOT. AND THAT IN THIS, AS WE MOVE FORWARD WITH THE SCIENTIFIC RESEARCH, WE HAVE TO REALLY USE WHAT WE KNOW TO EDUCATE PARENTS BUT ALSO NOT TO LET A CULTURE OF FEAR CREEP IN, JUST AS YOU HAD JUST SAID. I USED THE OPPORTUNITY TO TALK TO ANYONE AND EVERYONE I WAS TALKING TO ABOUT THE FACT THAT NIH, THROUGH NICHD, THROUGH NCMRR, THROUGH OTHER I Cs IN NINDS AND OTHER ICs HAVE BEEN FUNDING THIS RESEARCH FOR DECADES, AND WHILE ALL THE RECENT PRESS ON THE NFL SPENDING MONEY AND DOD, NIH HAS BEEN DOING THIS FOR A LONG, LONG TIME. I MEAN, OUR FUNDING IN THIS AREA STARTED IN 2000. AND SO I WANTED TO REITERATE TO EVERYONE THAT THAT IS AN ONGOING PROCESS AND NIH HAS BEEN INVOLVED AND WILL CONTINUE TO BE INVOLVED FOR A LONG TIME, I THINK. >> THANK YOU, RICK. IT WAS GREAT TO HAVE YOU THERE. UPCOMING THINGS, THE FRIENDS OF NICHD ARE VERY KINDLY HOSTING A BRIEFING ON JUNE 9TH IN HONOR, REALLY, OF YVONNE'S RETIREMENT FROM NICHD, NOT FROM THE NIH. ESPECIALLY FOLKS IN HEALTH DISPARITIES, YOU SEE THERE FOLKS WHO WILL BE SPEAKING AT THIS, AND THEN THERE WILL BE A SORT OF SOCIAL RECEPTION AFTERWARDS, WHICH IS VERY NICE OF THE FRIENDS TO PUT TOGETHER. OTHER THINGS THAT HAVE BEEN HAPPENING ON THE HILL, THE GA BREE EL A MILLER -- CHECKOFF FUND FOR PRECEDENTIAL CAMPAIGN BASICALLY SAYS THAT THE MONEYS LEFT IN THAT CHECK-OFF FUND WILL BE PLACED IN A SPECIAL ACCOUNT TO BE SPENT ONLY ON PEDIATRIC RESEARCH. IT AUTHORIZES -- I'LL COME BACK TO THE UNDERLINE IN A MOMENT -- A 10-YEAR PEDIATRIC RESEARCH INITIATIVE THROUGH THE NIH COMMON FUND, THEREFORE GOING ACROSS ALL ICs, WHICH IS A GOOD WAY TO DO IT, I THINK OF, OF $12.6 MILLION PER YEAR EACH IN THAT 10-YEAR PERIOD. REALIZE THAT'S AN AUTHORIZATION, IT'S NOT AN APPROPRIATION, IT'S NOT AS THOUGH AS SOME PEOPLE ASSUME THAT CONGRESS HAS GIVEN NIH AN EXTRA $12.6 MILLION A YEAR TO DO THIS. THERE STILL ARE THE SAME CAPS ON FEDERAL SPENDING IN PLACE, ET CETERA, ET CETERA, SO IF CONGRESS WERE TO SAY WE WANT TO GIVE YOU AN EXTRA 12.6 MILLION, THEY WOULD HAVE TO TAKE THAT OUT OF SOME OTHER PART OF THE LABOR-HHS ALLOCATION. SO WE'LL SEE WHEN THEY MARK THINGS UP, ET CETERA, WHETHER THERE'S ACTUALLY NEW MONEY OR SIMPLY NEW SORT OF URGING US ON IN THIS AREA. SO WITH THAT, I'M GOING TO STOP AND ASK ARE THERE ANY THINGS I DIDN'T GET TO ABOUT LIFE AT NICHD OR -- CATHY WILL TALK ABOUT MORE THINGS IN THE EXTRAMURAL WORLD, BUT QUESTIONS ABOUT ANYTHING I DIDN'T GET TO? >> I JUST HAD ONE QUESTION REGARDING THE -- I GUESS THE RECEIPT AROUND THE INTRAMURAL PROGRAMS, WHERE THERE WAS A DISCUSSION AROUND PEDIATRIC RESEARCH FOR THEIR CONSIDERATION OF INITIATIVES THAT WOULD MOVE FORWARD WITH NCATS IN THEIR REPURPOSING PROGRAMS FOR PEDIATRIC USE OF DRUGS? >> YES, THAT IS PART OF THE DISCUSSION AND PART NOT JUST IN TERMS OF THE INTRAMURAL PROGRAM BUT LOTS OF DISCUSSION WITH NCATS ABOUT THE ROLE OF PEDIATRIC RESEARCH WITHIN THE CTS As AS WELL. SORT OF A SEPARATE DISCUSSION BUT GOING ON AT THE SAME TIME. I THINK PART OF THE VISION FOR USE OF THE CLINICAL CENTER IN GENERAL IS TRYING OH TO INTEGRATE IT MORE INTO SOME OTHER ACTIVITIES INCLUDING THE EXTRAMURAL WORLD, ET CETERA, SO THAT THAT INDEED COULD BE PART OF IT. >> THANK YOU. >> THAT'S A GOOD POINT. >> ALAN, THANK YOU, GREAT SUMMARY. I WAS GLAD YOU MENTIONED DR. COLLINS' PAPER INCLUDING FEMALE ANIMALS IN RESEARCH. THAT WAS REALLY EXCELLENT. BUT MAYBE YOU CAN CONVINCE HIM THAT THE FOLLOW-UP TO THAT IS TO INCLUDE PREGNANT FEMALE ANIMALS. >> WE WILL WORK ON THAT. IT'S A VERY GOOD POINT. THANK YOU. >> I JUST WAS GOING TO OBSERVE, IF POSSIBLE TO KEEP THOSE LIGHTS ON ABOVE THE SPEAKER? BECAUSE YOU WERE SPEAKING OUT OF THIS DARK HOLE AS FAR AS I COULD TELL. NOT IN TERMS OF CONTENT. [LAUGHTER] >> SOME PEOPLE REQUEST THAT I BE KEPT IN THE DARK, BUT FOR OTHER SPEAKERS, WE'LL TRY TO BE MORE LIBERAL WITH THE LIGHTING. WE MIGHT AS WELL ENJOY ACTUALLY A FUNCTIONAL BUILDING WHILE WE HAVE ONE. SO IF THERE ARE NO OTHER QUESTIONS, I WILL TURN IT OVER TO CATHY, WHO WILL GIVE HER -- AND I'M GOING TO SET A SARTORIAL SINCE JERRY HAS BEEN COMMENTING UPON MY GOOD LUX, I'M GOING TO SET A SARTORIAL STANDARD BY TAKING MY JACKET OFF. I KNOW OTHER MEMBERS OF COUNCIL HAVE DONE THAT TO LET PEOPLE KNOW IT'S HOT IN THIS ROOM, SO IF YOU'D LIKE TO DISPENSE WITH YOUR JACKETS OR WHATEVER YOU WOULD DISPENSE WITH, YOU SHOULD FEEL FREE TO. >> THANK YOU, ALAN. I WANT TO WELCOME YOU ALL. IT'S WONDERFUL TO SEE YOU ALL, IT'S WONDERFUL TO SEE STAFF TODAY. IT'S A LITTLE BIT OF A DIFFERENT FEEL FOR A COUNCIL MEETING. OUR NEW COUNCILMEMBERS DON'T APPRECIATE THAT, BUT THERE'S A COUPLE OF THINGS MISSING, RIGHT? YVONNE IS MISSING, SO USED TO HAVING HER HERE AT ALL OF OUR COUNCIL MEETINGS. WE HAD TO TURN RIGHT AND RIGHT TO COME INTO THIS ROOM, WE'RE USED TO GOING LEFT AND LEFT. THE ROOM'S IN THE WRONG ORIENTATION. IT'S A VERY DIFFERENT FEEL TO THE MEETING AND I JUST WANT TO REALLY ECHO THAT FOR THE EXTRAMURAL COMMUNITY, IT'S JUST WONDERFUL TO SEE ALL OF OUR STAFF HERE. IT'S BEEN A LONG TIME, IT WAS ON THE 16TH THAT THIS HAPPENED TO THE BUILDING AND IT'S BEEN A VERY TRYING TIME WHERE, YOU KNOW, INITIAL THOUGHTS WERE MAYBE THIS WASN'T A BIG DEAL THAT OH, MY GOODNESS, THIS IS A VERY BIG DEAL AND REALLY HOW TO WORK THROUGH THIS AND THE INKRED IBLG DEDICATION OF THE STAFF TO CONTINUE TO WORK REALLY UNINTERRUPTED DESPITE THESE HUGE CHALLENGES OF JUST BEING ASKED TO LEAVE THE BUILDING BECAUSE OF CONCERN, AND THEN REALLY NOT BEING ABLE TO GET BACK IN FOR THE MOST PART. PEOPLE HAVE GONE IN FOR SHORT PERIODS OF TIME TO COLLECT MISSION-CRITICAL DOCUMENTS, BUT THEN THE BUILDING HAS ACTUALLY BEEN CLOSED AND WE'VE NOT BEEN ABLE TO GO IN TO GET ANYTHING. SO IT'S BEEN A CHALLENGING TIME FOR US. I'D LIKE TO GIVE A LITTLE BIT OF AN UPDATE FOR YOU, THE MAJORITY OF MY UPDATE, I'M GOING TO ASK DR. HOLMES, THE CHIEF OF THE NEW BRANCH ON PEDIATRIC TRAUMA AND CRITICAL ILLNESS, TO COME UP AND PRESENT AS WELL BECAUSE SHE'S JUST DONE A WONDERFUL JOB LAUNCHING THIS BRANCH, AND SHE NOW HAS DR. TAMBURO TO ASSIST, AND SHE'S GOT A GREAT STAFF WITH HER THAT I KNOW SHE'S GOING TO INTRODUCE. SO THE MAJORITY OF MY PRESENTATION, I'M GOING TO CEDE TO VALERIE. COUPLE OF THINGS I'D LIKE TO GO OVER. ONE IS THE HUMAN PLACENTA PROJECT, OUR NICE IMAGE HERE OF THE HUMAN PLACENTA PROJECT THAT WE'LL BE TALKING A LITTLE BIT MORE ABOUT LATER ON THIS MORNING AND SOME OF OUR MEMBERS HERE WERE ABLE TO ATTEND THAT MEETING AND WILL HAVE A LITTLE BIT OF DIALOGUE ABOUT THE MEETING ITSELF, BUT I WANTED TO SHOW YOU THE PRETTY PICTURE THAT WE HAD FOR THAT MEETING. AS WE DISCUSSED AT OUR LAST COUNCIL MEETING, I JUST WANTED TO UPDATE YOU ON THE REVIEW OF CONTRACEPTIVE RESEARCH AT NICHD. AS YOU ARE WELL AWARE AS WE HAVE DISCUSSED, CLEARLY RESEARCH ON CONTRACEPTIVE DEVELOPMENT AND USE IS ABSOLUTELY CRITICAL AND ESSENTIAL TO THE NICHD MISSION. AS NICHD IS ONE OF THE FEW ENTITIES TA FUNDS CONTRACEPTIVE RESUCRESEARCH AND DEVELOPMENT, WE HAVE A RESPONSIBILITY TO REVIEW OUR PROGRAMS AND MAKE SURE CHANGES -- IN ADDITION GIVEN OUR CURRENT FISCAL CONSTRAINTS AND REALLY LIMITED RESEARCH IN THE PRIVATE SECTOR, ASSESSMENT OF OUR RESEARCH PORTFOLIO IS PARTICULARLY TIMELY TO IDENTIFY THE AREAS OF CONTRACEPTIVE RESEARCH THAT WE SHOULD PURSUE IN THE FUTURE. SO WE'RE VERY EXCITED THAT WE HAVE IDENTIFIED OUR PANEL. WE HAVE TWO CO-CHAIRS, DR. KAUF IS ONE, THANK YOU FOR TAKING THIS ON, AND DR. MELISSA GILLIAM IN CHICAGO IS THE OTHER CO-CHAIR. THIS GROUP WILL MEET VIRTUALLY SEVERAL TIMES BEFORE AN IN PERSON MEETING THAT WILL BE HELD BEFORE THE SEPTEMBER COUNCIL MEETING, AND WE ANTICIPATE THAT THEY WILL -- WE WILL HAVE A REPORT BACK TO COUNCIL IN JANUARY. SO JUST TO LET YOU KNOW THAT THIS IS ONGOING. STAFF ARE WORKING VERY HARD TO PULL TOGETHER THE INFORMATION THAT THIS GROUP MAY WANT AND THEN WE'LL, OF COURSE, PULL TOGETHER ADDITIONAL INFORMATION THE GROUP ASKS FOR ASSUMING THAT WE'RE ABLE TO DO -- ASSUMING WE HAVE THAT INFORMATION. WANTED TO TO LET YOU KNOW ABOUT ANOTHER INITIATIVE THAT WE ARE UNDERTAKING, AND THIS IS -- DOESN'T HAVE A GOOD CATCHY NAME YET, WE'RE WORKING ON THAT, THE PREGNANCY REGISTRY. THE GOAL OF THIS IS TO CREATE A NATIONAL PREGNANCY REGISTRY TO LEARN ABOUT THE RANGES OF PHYSICAL AND EMOTIONAL EXPERIENCES, ALTERATIONS IN BEHAVIOR, THAT WOMEN HAVE DURING PREGNANCY AND AFTER GIVING BIRTH. AND THE IMPACT OF THESE EXPERIENCES ON THEIR LIVES AND THE CHALLENGES ENCOUNTERED BY SPECIAL SUBPOPULATIONS OF WOMEN. WE WILL BE HOLDING A MEETING ON JUNE 30TH WITH A NUMBER OF DIFFERENT POTENTIAL COLLABORATORS WITH US FOR THIS PROJECT. THIS IS PLANNED TO BE A REGISTRY, AND WE'RE HARNESSING THE EXPERIENCE THAT NICHD HAS HAD WITH THE S CONNECT, WHICH LU HEAR AN UPDATE FROM DRS. MADDOX AND PIRISI LATER ON HAD THIS MORNING. THE THOUGHT IS BY DOING THIS AS AN INTERNET BASED REGISTRY, WE CAN HARNESS THE CROWD SOURCING TO COLLECT INFORMATION FROM WOMEN ABOUT PERSONAL EXPERIENCES DURING PREGNANCY, PROVIDE INFORMATION FROM THEM ABOUT PREGNANCY AND ITS COMPLICATIONS, POTENTIALLY SERVE AS A LARGE EPIDEMIOLOGIC RESEARCH DATABASE UNDERSTANDING THERE ARE LIMITATIONS WHEN YOU DO THIS AS AN INTERNET-BASED COLLECTION, IT'S GOING TO COLLECT A CERTAIN SUBSET OF THE POPULATION, BUT NONETHELESS, IT POTENTIALLY COULD BE A VERY LARGE SUBSET OF THE POPULATION AND PROVIDE US GOOD INFORMATION EVEN THOUGH WE KNOW IT CANNOT BE COMPLETELY GENERALIZABLE. AS WELL AS POTENTIALLY PROVIDE A POOL OF POTENTIAL RECRUITS FOR CLINICAL STUDIES, WHICH CERTAINLY IS PART OF THE ROLE OF DS CONNECT. SOME OF THE QUESTIONS THAT WE WILL BE PONDERING AT OUR MEETING ON THE 30TH INCLUDE HOW THIS NATIONAL PREGNANCY REGISTRY MIGHT BE SIMILAR TO OR DIFFERENT FROM OTHER REGISTRIES, BOTH IN CONTENT, IN STRUCTURE AND IN FUNCTION. IF YOU GO AND GOOGLE PREGNANCY REGISTRY OR PREGNANCY DATA OR I WANT TO BLOG ABOUT MY PREGNANCY, YOU'LL FIND THAT THERE ARE A NUMBER OF VENUES OUT THERE TO DO THIS. WHERE PEOPLE CAN INPUT CERTAIN DATA, THEY CAN COLLECT CERTAIN INFORMATION. MANY OF THESE ARE TIED TO SPECIFIC COMPANIES WHERE THEY HAVE SPECIFIC INTERESTS IN CERTAIN AREAS. AND I DO BELIEVE THAT THERE IS A UTILITY OF DOING THIS SEPARATE FROM ALL OF THOSE TYPES OF ENTITIES. BUT WE'LL BE DISCUSSING THAT AT THE MEETING ON THE 30TH. ANOTHER QUESTION THAT WE WILL BE PONDERING IS HOW DO WE ENCOURAGE WOMEN TO SUBMIT THE DATA, WHAT IS THE CARROT, WHAT IS THE THE PULL FOR THEM, HOW DO WE GET THEM TO COME BACK AND CONTINUALLY ENTER DATA. BECAUSE DIFFERENT THAN DS CONNECT, WHERE REALLY YOU'RE GETTING A LOT OF INFORMATION UP FRONT AND THEN PERIODIC UPDATES, THIS WOULD BE MOST USEFUL IF WOMEN PUT IN INFORMATION ON A VERY REGULAR AND FREQUENT BASIS, AND HAVE THEM COME BACK AND CONTINUALLY ENTER DATA THROUGHOUT THEIR PREGNANCY. WHAT FEEDBACK CAN WE GIVE WOMEN IN THIS REGISTRY AND FOOD BACK CAFEEDBACKCAN BE INSTANT, THIS TIES THEM BACK TO OUR COLLABORATORS AND OUR POTENTIAL PEOPLE TO WORK WITH TO SEE HOW CAN WE UTILIZE THIS TO REALLY GIVE WOMEN SOMETHING THAT THEY WANT TO BE A PART OF. A LOT OF ORGANIZATIONS AND FEDERAL PARTNERS WILL BE INCLUDED IN THIS COLLABORATOR IS' MEETING AND THIS IS A BRIEF LIST OF MANY OF THE ORGANIZATIONS AND FEDERAL PARTNERS THAT WE HAVE COMMITMENTS FROM. SOME ARE VERY INTERESTED BUT COULD NOT ATTEND THAT MEETING. WE'RE CERTAINLY WELCOME AND OPEN TO HAVING ADDITIONAL PARTNERS AND ORGANIZATIONS WORKING WITH US. THERE ARE ALSO SOME GROUPS THAT WOULD LIKE TO WORK WITH US BUT ARE MORE SUITED TO WORKING ONCE THE REGISTRY IS ACTUALLY BEING DEVELOPED, NOT JUST THIS PIE IN THE SKY TYPE PORTION. SO WE LOOK FORWARD TO THIS PROJECT AND WE'LL BE UPDATING YOU ON THIS PROJECT AS WELL. A LITTLE NOTE ABOUT STAFFING AND OPERATIONS, AS ALAN MENTIONED, WE HAVE SOME NEW STAFF. ROBERT TAMBORRO IS WITH US TODAY, LISA WILL START IN MID JUNE. I WANT TO APPRECIATE THEIR PATIENTS IN TRYING TO START IN THIS VERY CHALLENGING TIME WHEN WE DON'T HAVE A BUILDING FOR THEM. WE WILL CERTAINLY MISS BOTH MARY LOU AND LYNNE IN THEIR RETIREMENTS. KIND OF LIKE THIS SLIDE, SLIDE OF CHALLENGES LEADING TO OPPORTUNITIES. IT JUST GIVES US A LITTLE BIT OF A FEELING OF WHAT OUR STAFF HAS HAD TO GO THROUGH OVER THE LAST SEVERAL YEARS AND CERTAINLY WE CAN DO THIS AT ANY TIME, RIGHT? WE ALL HAVE CHALLENGES IN OUR LIVES WE GO THROUGH. THESE JUST SIMPLY HAVE BEEN LITTLE LARGER CHALLENGES THAT I WAS ANTICIPATING. YOU SHOULD EXPECT A HURRICANE EVERY ONCE IN A WHILE SO HURRICANE SANDY, I CAN UNDERSTAND. THE SEQUESTER WASN'T SUPPOSED TO HAPPEN, BUT IT ACTUALLY DID, AND THEN THE GOVERNMENT WASN'T SUPPOSED TO SHUT DOWN BUT SOMEHOW WE ACTUALLY DID SHUT DOWN AND STAFF WERE NOT ALLOWED TO WORK, AGAIN, FOR A PERIOD OF TIME, WHICH WAS REALLY DIFFICULT. WEATHER-RELATED, WE HAD A LOT OF WINTER STORMS. WASHINGTON WAS HIT WITH A LOT OF SNOW THIS YEAR. THE FEDERAL GOVERNMENT CLOSED ON A NUMBER OF OCCASIONS, SO STAFF HAD SOME CHALLENGING TIMES TO WORK DURING THAT TIME PERIOD, ESPECIALLY WHEN REVIEW MEETINGS WERE BEING SCHEDULED OR OTHER WORKSHOPS WERE BEING HELD AND PEOPLE WERE FLYING IN AND WERE ACTUALLY HERE SO WANTED TO HAVE THE MEETING. BUT THE BUILDING, I REALLY NEVER EXPECTED. I'LL JUST PUT THAT OUT THERE. ALL THE OTHERS, OKAY, BUT THE BUILDING, REALLY? SO A BIT OF A CHALLENGE. WE'RE WAITING FOR THE LOCUSTS. [LAUGHTER] THAT WAS PRETTY GOOD, RIGHT? LET'S TRY THAT AGAIN. I DIDN'T EVEN HAVE MY DAUGHTER HELP ME. SHE'S 15, SHE'S PRETTY GOOD AT THAT. I DID THAT ONE ALL BY MYSELF. SO HOW ARE WE DOING THIS, AND HOW ARE WE COPING AND I JUST CANNOT GIVE A BIGGER SHOUT OUT TO THE STAFF AND THEIR PATIENCE AND THEIR DEDICATION TO GETTING THE WORK DONE. REALLY, NO COMPLAINING, A LOT OF INTEREST AND DESIRE TO HAVE A PLACE TO WORK, AND TO BE ABLE TO GET BACK INTO THE OFFICE. WE'VE FUNCTIONED PREDOMINANTLY ON TELEWORK. THERE ARE SOME STAFF WHO ARE UP ABLE TO TELEWORK FOR A NUMBER OF DIFFERENT REASONS AND WE'VE IDENTIFIED SPACE FOR THOSE WHO WERE NOT ABLE TO TELEWORK. THAT SPACE HAS NOT BEEN IDEAL OR OPTIMAL FOR MANY OF THEM. BUT IT HAS BEEN WORKABLE AND WE'VE HAD A LOT OF HELP FROM OTHER ICs AND OFFICES IN PROVIDING SOME SPACE FOR US AND WE THANK THEM FOR THAT. A NUMBER OF THE NICHD OFFICES HAVE ALLOWED US TO USE THEIR PRINTERS, AS YOU CAN MANL, IN A MEETING LIKE THIS, THERE'S A LOT OF WORK THAT HAS TO BE DONE, AND IT NEEDS TO BE DONE WITH EQUIPMENT. WE HAVE HAD DAILY COMMUNICATION UPDATES. KATHLEEN STEPHAN AND JOHN J. ARMON HAVE DONE A PHENOMENAL JOB AT LETTING STAFF REALLY KNOW WHAT'S GOING ON, AND REALLY JUST KIND OF KEEPING THE FLOW OF INFORMATION GOING BECAUSE THERE'S NOTHING WORSE THAN NOT KNOWING WHAT'S HAPPENING, AND WE ALWAYS ANTICIPATE SOMETHING IS HAPPENING. UNFORTUNATELY THE TIME FRAME AND THE SPEED AT WHICH THINGS HAPPEN IS SLOWER THAN WE DESIRE. WE HAVE WEEKLY BRANCH CHIEF MEETINGS NOW HAVE BEEN IMPLEMENTED TO, AGAIN, GIVE THAT DAILY -- GIVE THAT WEEKLY COMMUNICATION, AND PROVIDE A FACE TO FACE MEETING FOR US WITH THE BRANCH CHIEFS. WE, I BELIEVE AS OF YESTERDAY, HAVE SOME SPACE IDENTIFIED IN TWO BUILDINGS, ONE IN ROCK LIDGE AND ONE IN 6006 EXECUTIVE BOULEVARD THIS IS ABOUT 20 TO 25 OFFICES OR CONFERENCE ROOMS COMBINED FOR OUR STAFF AS A LANDING SPOT TO ALLOW US TO HAVE SOME MEETINGS. THE GOAL IS TO MAKE CERTAIN THAT WE HAVE SPACE. THESE ARE DEDICATED TO NICHD FOR EACH BRANCH TO BE ABLE TO MEET IN PERSON EACH WEEK, AND THEN FOR MANY OF THESE MEETINGS THAT WE HAVE ONGOING WHERE WE HAVE PEOPLE FROM THE OUTSIDE COMING IN TO MEET WITH US, WE NEED A LAND PLACE FOR THEM, WE NEED PEOPLE TO TO BE ABLE TO MEET IN A ROOM SO THESE SPOTS AND CONFERENCE ROOMS AND MEETINGS ROOMS, FURNITURE IS BEING PROCURED AND PUT IN THEM SO THEY HAVE A PLACE, THEY DON'T HAVE TO BE STAND-UP MEETINGS. I KNOW SOMETIMES THEY'RE A GOOD THING, THEY CAN GO IK QUICKLY, BUT IT'S REALLY NOT APPROPRIATE THAT WE SHOULD ONLY HAVE STAND-UP MEETINGS. AND WORKED VERY HARD TO RELOCATE ALL MEETINGS THAT ARE SCHEDULED FOR THE 6100 SPACE IN THE FORESEEABLE FUTURE. WE HAVE A NUMBER OF CONFERENCES AND WORKSHOPS AND STEERING COMMITTEE MEETINGS THAT ARE TYPICALLY HELD IN 6100 SO WE'VE HAD TO FIND ALTERNATIVE SPACE FOR THOSE. AND ONE OF THE VERY IMPORTANT THINGS FOR US HAS BEEN TO TRY TO KEEP LIFE AS BEST WE CAN CONSISTENT, SO THOSE MEETINGS THAT WE HAVE THAT ARE REGULAR MEETINGS, EXTRAMURAL STAFF MEETINGS, EXTRAMURAL STAFF TRAINING, WE'RE TRYING TO KEEP THOSE ON THE BOOKS AND FIND PLACES FOR THEM AND NOT CANCEL THINGS JUST BECAUSE WE DON'T HAVE A SPACE FOR THEM. BECAUSE WE APPRECIATE THAT BEING TOGETHER IS IMPORTANT FOR STAFF, AND IMPORTANT FOR US ALL TO BE ABLE TO MOVE THINGS FORWARD. SO IT CERTAINLY IS A CHALLENGING TIME, AND ONE THAT WE LOOK FORWARD TO A RESOLUTION, BUT WE REALIZE THAT IS GOING TO BE QUITE SOME TIME IN COMING. SO NOW WITH THAT, I'D LIKE TO TURN THE PODIUM OVER TO VALERIE AND SHE'LL GIVE A LITTLE UPDATE TO YOU ON THE PEDIATRIC TRAUMA AND CRITICAL ILLNESS BRANCH. AS YOU KNOW, VALERIE TOOK OVER THIS BRANCH. SHE WAS THE ACTING BRANCH CHIEF AND THEN PAI BECAME THE PERMANENT BRANCH CHIEF AND HAS REALLY DONE JUST A PHENOMENAL JOB IN LAUNCHING THIS BRANCH ALONG WITH HER STAFF BUILDING COLLABORATIONS IDENTIFYING THE MISSION OF THE BRANCH AND I WANTED HER TO SHARE THAT STORY WITH YOU. >> UNFORTUNATELY I WASN'T ABLE TO DO THE FANCY GRAPHICS ON MY IPHONE OR iPAD WORKING AT MY DESKTOP, BUT GOOD MORNING, AND WELCOME TO COUNCIL. AGAIN I'M JUST REALLY DELIGHTED TO BE SHARING AN UPDATE WITH YOU. THIS IS PROBABLY A DREAM JOB FOR A PERSON LIKE ME WHO'S INTERESTED IN SCIENCE, WHO'S INTERESTED IN JUST ABOUT INTELLECTUAL, AND BEING ON THE GROUND FLOOR OF THE BRANCH, TO HELP BUILD BUILD THE BRANCH AND DECIDE WHERE IT'S GOING TO GO AND MOST IMPORTANTLY TO ACCOMPLISH, TO HAVE THIS BRANCH BE POSITIONED TO ACCOMPLISH NICHD'S VERY IMPORTANT MISSION IS JUST VERY EXCITING AND CHALLENGE ALL AT THE SAME TIME. BUT RIGHT NOW WE'RE IN THE EXCITEMENT PHASE AND I HOPE THAT WHEN WE'RE DONE, WE HAVE ALL OF YOU EXCITED AS WELL AND THAT WE CAN RECRUIT YOU IN HELPING US TO FURTHER OUR MISSION. SO BEFORE WE START, I'D LIKE TO INTRODUCE THE TEAM WHO'S BEEN HELPING US BUILD THIS BRANCH. YOU'VE HEARD THAT WE'VE JUST BROUGHT ON DR. ROBERT TAMBORRO. HE IS STILL SMILING. WE HAVEN'T RUN HIM AWAY YET, HAVEN'T TOLD HIM EVERYTHING THAT I HAVE IN MIND FOR HIM JUST YET. BUT WE ARE DELIGHTED TO HAVE HIM ON BOARD AND JOINING US. BUT I REALLY WANT TO INTRODUCE YOU TO MS. TAMARA JENKINS, OUR ADVANCED PRACTICE NURSE. MANY YOU HAVE DON'T KNOW HER, BUT SHE'S BEEN REALLY THE GLUE THAT'S HELD OUR NETWORK TOGETHER FOR A NUMBER OF YEARS AND HAS HELPED US TO BE ABLE TO MAKE A SMOOTH TRANSITION FROM WHERE OUR PEDIATRIC CRITICAL CARE PROGRAM WAS TO NOW BEING SUBSUMED UNDER THE BRANCH, AND I'LL TALK ABOUT THAT TRANSITION A LITTLE BIT MORE. BUT WE'RE DELIGHTED TO HAVE THIS TEAM AND TO HAVE TAMMY'S LEADERSHIP CONTINUE IN THE BRANCH. BECAUSE WE'RE A SMALL ENTITY AND WE'VE CONTINUED, I THINK FOR THE FORESEEABLE FUTURE, WE'LL CONTINUE TO BE A MEAN AND LEAN TEAM WORKING TOGETHER, I'VE DRAFTED OTHER PEOPLE FROM OTHER BRANCHES, THANK YOU TO THE BRANCH CHIEF FOR ALLOWING THAT, TO HELP US TO GET ESTABLISHED. DR. LYNNE IS A MEMBER OF THE CHILD DEVELOPMENT AND BEHAVIOR BRANCH AND HAS BEEN JUST SO INSTRUMENTAL IN HELPING US WITH SOME OF OUR INJURY PROGRAMS AND OUR HEALTH PROMOTION PROJECTS. DR. RUTH BRENNER IS IN THE NATIONAL CHILDREN'S STUDY AND VOLUNTEERED TO WORK WITH US ON HELPING WITH SOME OF OUR EMERGENCY -- PEDIATRIC EMERGENCY MEDICINE PROGRAMS AND OUR INJURY PROGRAMS, AND WE'RE JUST DELIGHTED THAT SHE'S JOINED US. AND YOURS TRULY, I'VE COME FROM THE CHILD DEVELOPMENT AND BEHAVIOR BRANCH AND HAS JUST HAD A WONDERFUL TIME. I'M LIKE A KID IN THE CANDY STORE WITH OUR BRANCH AND ALL THE POTENTIAL POSSIBILITIES FOR WHERE WE CAN GO. SO AS YOU KNOW, ESPECIALLY FOR THOSE OF YOU THAT ARE NEW TO COUNCIL ABOUT 18 MONTHS AGO, THE BRANCH WAS ESTABLISHED IN RESPONSE TO THE VISION PROCESS THAT WE UNDERTOOK UNDER DR. GUTTMACHER'S LEADERSHIP, AND THE FIELD REALLY REQUESTED THAT WE HAVE A STRONG FOCUS ON PEDIATRICS AND PEDIATRIC TRAUMA, INJURY, AND EMERGENCY MEDICAL SERVICES FOR CHILDREN BECAUSE JUST AS DR. GUTTMACHER DESCRIBED ABOUT CONCUSSIONS AND HEALTHY -- HAVING HEALTHY CHILDREN, THERE'S SO MUCH MORE THAT WE NEED TO KNOW DEVELOP MEANTLY ABOUT CHILDREN, AND AS WE'VE HEARD OVER AND OVER AGAIN, THAT CHILDREN AREN'T SMALL ADULTS AND WE NEEDED TO REALLY HAVE A PLACE AND A HOME FOR THIS KIND OF RESEARCH. SO IN RESPONSE TO THIS OUTCOME OF THE VISIONING AND THE FIELDS REQUEST, WE ESTABLISHED THE BRANCH, AND TO BRING THESE AREAS OF SCIENCE TOGETHER, WHAT WE DID WAS TO INITIALLY FEED THE BRANCH BY DRAWING IN PROJECTS OF THE REPRESENTATIVE SCIENCE THAT WE ANTICIPATE INVESTING IN IN THE FUTURE, AND AFTER HAVING MANY DISCUSSIONS WITH OUR COLLEAGUES IN THE BRANCHES FROM WHICH THIS WORK EMANATES ABOUT THE CRITICAL POINTS OF DEPARTURE, WE TOOK PROGRAMS TO GET US STARTED FROM LYNNE'S PEDIATRIC BEHAVIOR AND INJURY PROGRAM AND THE CHILD DEVELOPMENT AND BEHAVIOR BRANCH, WE TOOK SOME OF MY PROJECTS FROM THE CHILD DEVELOPMENT BEHAVIORAL BRANCH IN CHILD MALTREATMENT AND VIOLENCE AND INJURY, AND WE TOOK FOR THE MOST PART THE ENTIRE CRITICAL CARE RESEARCH PROGRAM FROM NCMRR, AND THAT INCLUDES OUR COLLABORATIVE PEDIATRIC CRITICAL CARE RESEARCH NETWORK AND THE K12 PROGRAM TRAINING PEDIATRIC CRITICAL CARE PHYSICIANS AND NOW TRAUMA SCIENTISTS. SO ALL OF THESE PROGRAMS TOGETHER COMPRISE THE BRANCH AND GAVE US A WONDERFUL STARTING POINT SO THAT WE WOULD BE FOCUSED ON THE CONTINUUM OF CARE, AND WE'VE GOT A BALANCE OF PSYCHOSOCIAL, BEHAVIORAL, MEDICAL PROJECTS IN THIS BRANCH, BUT REALLY FOCUSING ON THE IMPACT ON CHILD HEALTH OUTCOMES AND TRAUMA INJURY IN CRITICAL CARE. I'D LIKE TO CALL US -- WHEN I GOT STARTED, I WAS TRYING TO THINK ABOUT HOW DO WE FRAME THIS, AND WHAT'S IMPORTANT FOR US, AND I JUST THOUGHT ABOUT THIS BRANCH REALLY RESTS ON THESE FOUR PILLARS. THREE OF THEM ARE SCIENTIFIC AREAS. THE PROJECT THAT WE BROUGHT OVER CLUSTERED TOGETHER IN THREE SCIENTIFIC AREAS: PEDIATRIC TRAUMA AND EMERGENCY CARE RESEARCH AND YOU CAN SEE WHAT THOSE AREAS OF INTEREST ARE AND WHAT THOSE BROAD STROKES OF THOSE AREAS ARE, PEDIATRIC INJURY AND VIOLENCE, LOOKING AT INTENTIONAL AND UNINTENTIONAL INJURIES AND A HOST OF OTHER AREAS, PEDIATRIC CRITICAL CARE MEDICINE THAT AGAIN COMPRISES OUR CAPCORN NETWORK AND K-12 BUT ALSO A HOST OF INVESTIGATOR INITIATED PROJECTS ON THAT TOPIC. AND THESE ARE THE THREE KIND OF SCIENTIFIC PILLARS OF THE BRANCH, BUT WE WERE CAREFUL IN BRINGING OVER THESE PROJECTS FROM THE BRANCHES FROM WHICH THEY EMANATED TO LEAVE ROOM FOR NOVEL IDEAS AND OPPORTUNISTIC INVESTMENTS THAT WOULD HELP ADVANCE THE SCIENCE IN THE AREAS OVER WHICH WE HAD STEWARDSHIP. SO YOU'LL NOTE THAT THESE DESCRIPTIONS OF THESE THREE SCIENTIFIC AREAS ARE RELATIVELY BROAD TO LEAVE US ROOM FOR THAT. BY THE FOURTH PILLAR IS WHERE WE'VE HAD THE MOST FUN, I THINK, AND WHAT I'D LIKE TO SPEND A LITTLE BIT OF TIME TALKING WITH YOU ABOUT, AND THAT'S COLLABORATION. AND WE FELT THAT THIS IS A MORE, YOU KNOW, OPERATIONAL PROCESS FOR THE BRANCH, BUT IT'S ESSENTIAL IN HELPING US TO IDENTIFY THE IMPORTANT SCIENTIFIC OPPORTUNITIES AND PROGRAM PRIORITIES, AND WE FELT THAT IT WAS SUCH A BREADTH OF RESEARCH FOR THIS BRANCH, THE BROAD ARRAY OF RESOURCES THAT WE WOULD NEED TO ACHIEVE OUR GOALS AND OF COURSE TO ENHANCE GOALS OF THE NICHD, THAT OF NECESSITY, WE'D HAVE TO COLLABORATE, WE COULD NOT DO THIS ON OUR OWN. SO WE DEVISED A PLAN TO GET OUT AND ABOUT AND GO ON LISTENING TOURS TO MEET AND LISTEN TO COLLEAGUES FROM OTHER NIH INSTITUTES, AS WELL AS OTHER AGENCIES, TO LEARN ABOUT THEIR WORK TO IDENTIFY AREAS OF POTENTIAL OVERLAP AND OPPORTUNITIES. WHAT WE THOUGHT WAS REALLY, REALLY IMPORTANT ABOUT THIS WAS THAT THERE WAS NO AGENDA. WE HAD NO ASK OF OUR COLLEAGUES IN OTHER PLACES. WE WEREN'T COMING TIN CUPPING ASKING FOR COFUNDING OR SUPPORT OR TO COLLABORATE OR JOIN IN ON ANY PARTICULAR INITIATIVE. OUR ONLY AIM WAS JUST TO LISTEN AND TO LEARN AND TO GET A SENSE OF THE BROAD LANDSCAPE OF RESEARCH SUPPORTED BY THESE OTHER ENTITIES AND THE GAPS IN RESEARCH THAT NICHD WOULD BE POISED TO ADDRESS. AND I MUST SAY THAT MY COLLEAGUES ACROSS THE NIH AND OTHER PLACES WERE JUST AS INTERESTED IN TALKING WITH US AS WE WERE TO LISTEN. OF COURSE THEY WANTED TO KNOW ABOUT OUR PROGRAM PRIORITIES AND WHETHER THOSE PRIORITIES OVERLAPPED WITH THE WORK THAT THEY WERE CURRENTLY DOING, BUT BY LISTENING AND TALKING WITH THOSE COLLEAGUES, WITHOUT HAVING A PREDETERMINED AGENDA, ONE LISTENING SESSION LED TO ANOTHER AND ANOTHER AND ANOTHER AND WITH VERY LITTLE EFFORT AND MINIMAL RESOURCES, WE WERE ABLE TO HIGH 10 THE AWARENESS ABOUT OUR BRANCH, TO IDENTIFY DISTINCTIVE AREAS WHERE THE NICHD COULD SHOW LEADERSHIP, AND MOST IMPORTANTLY, RAISE THE LEVEL OF DISCOURSE ON THE COMPELLING NEEDS OF VULNERABLE, CRITICALLY ILL AND INJURED CHILDREN. SO IN ADDITION TO GOING OUT AND LISTENING, WE'VE BROUGHT PEOPLE IN TO LISTEN AND WE'VE ALREADY TALKED ABOUT SOME OF THESE MEETINGS EARLIER. BUT WE HELD LAST YEAR AN INAUGURAL MEETING REGARDING THE ABUSE/HEAD TRAUMA, AS A FOLLOW-ON TO AN EARLIER MEETING ON INFLICTED NEUROTRAUMA, AND WE WANTED TO EXAMINE THE MOVEMENT IN THIS AREA OF SCIENCE, AND WE THOUGHT THAT THIS WAS IMPORTANT BECAUSE THERE'S BEEN AN EVOLVING UNDERSTANDING ABOUT ABUSIVE HEAD TRAUMA, ABOUT THIS PHENOMENON, AND WE ALSO RECOGNIZED THAT THE DIFFERENTIAL DIAGNOSIS OF ABUSIVE HEAD TRAUMA IS BROAD AND CLINICIANS WHO E EVALUATE THESE CHILDREN ARE WELL AWARE OF THE POTENTIAL FOR THE AND THE CONSEQUENCES OF MSKCC DIAGNOSIS, SO WE THOUGHT IMISDIAGNOSIS.THERE'S A PRES SING NEED TO CALL MORE ATTENTION TO PREVENTION, EDUCATING PARENTS, PEDIATRICIANS AND OTHER HEALTHCARE PROVIDERS REGARDING THE SIGNS AND SYMPTOMS OF ABUSIVE HEAD TRAUMA, THE RISK FACTORS FOR INFANTS, AND THE RISK FACTORS FOR INCREASING THE LIKELIHOOD OF ABUSE BY PARENTS AND/OR CAREGIVERS. WE ALSO HELD AS ALAN MENTIONED EARLIER TWO MEETINGS LAST MONTH. THE FIRST WAS ON MILITARY CONNECTED CHILDREN WITH SPECIAL HEALTHCARE NEEDS AND THEIR FAMILIES. AND AGAIN, THE GOAL OF THIS MEETING WAS TO EXPLORE WHAT IS KNOWN ABOUT THESE CHILDREN AND THEIR FAMILIES, TO IDENTIFY THE GAPS IN RESEARCH AND TO DETERMINE WHAT A POTENTIAL RESEARCH AGENDA COULD BE. AND WHAT'S NOTABLE ABOUT THAT MEETING WAS THAT WE HAD A DIVERSE COLLECTION OF PEOPLE ATTENDING AND PARTICIPATING. AGAIN WITH A GOAL TOWARD LISTENING AND LEARNING. SO WE HAD PARENTS THERE WHO HAD CHILDREN WITH SPECIAL HEALTHCARE NEEDS, WE HAD MILITARY PERSONNEL. I LEARNED FOR THE FIRST TIME THAT NIH HAS A VETERANS RECRUITMENT FORCE, MEMBERS OF THOSE STAFF JOINED US AND TALKED TO US ABOUT THOSE ISSUES AND WHERE RESEARCH IS NEEDED AND WHERE THE GAPS ARE. WE HAD MEMBERS OF VARIOUS DIVISIONS OF THE DEPARTMENT OF DEFENSE JOINING US AS WELL AS THE DEPARTMENT OF EDUCATION THAT DEAL WITH THE MILITARY SCHOOLS, AND WHERE A LOT OF HEALTHCARE NEEDS ARE LEARNED ABOUT IN THE SCHOOL CONTEXT. AND THEN FINALLY, WE HEALTH OUR STRATEGIC PLANNING MEETING TO HELP US IDENTIFY THE HALLMARK SCIENCE OF THE BRANCH AND TO CHART OUR GOALS OVER THE NEXT FIVE YEARS. WE BROUGHT IN ABOUT 20 EXPERTS AROUND THE COUNTRY TO ADVISE US AND TO HELP US THINK ABOUT THE STRATEGIES TO INSTIGATE COLLABORATION AMONG UNLIKELY PARTNERS AND TO BUILD A COMMON LANGUAGE AMONG RESEARCHERS WHO HAVE COMMON INTERESTS. BUT MANY OF THEM MAY NOT HAVE HAD IN THE PAST OPPORTUNITIES TO TALK TO ONE ANOTHER. SO WE ASKED THEM A VARIETY OF QUESTIONS, WE DIDN'T WANT TO HAVE YOUR USUAL KIND OF TALKING HEAD MEETING WHERE PEOPLE WOULD SAY THIS IS MY AREA OF SCIENCE, THIS IS WHAT I'M DOING, BUT WE ASKED THEM TO LOOK AT OUR PORTFOLIO OF HOLDINGS AND TO FIND IF THERE WERE ANY OBSCURED OPPORTUNITIES THAT WE HAD IN MIND, WHERE THERE ARE DATA WE HAD IN MIND, OPPORTUNITIES THAT WE NEED TO UNDERTAKE THAT HERETOFOREWE HADN'T EXPLORED. THERE WERE IMPORTANT INVESTMENTS THAT WE NEEDED TO MAKE THAT WE HADN'T ALREADY DONE. AND WHAT WERE THE AREAS THAT WERE WELL POISED FOR TRANSLATION OR INTERVENTION THAT WE NEEDED TO PAY ATTENTION TO. SOME OF THE CONSIDERATIONS, WE ASKED THEM TO THINK ABOUT WERE WORKFORCE ISSUES, WE WANT TO FOSTER MORE DIVERSITY, THAT'S OF COURSE AN NIH INTEREST AND WE CERTAINLY WANT TO BE REPRESENTATIVE OF THAT IN THE BRANCH, WE WANT TO FOSTER MORE RESEARCH COLLABORATIONS AND THINKING ABOUT DIFFERENT MECHANISMS THAT MIGHT BE AVAILABLE TO US, AND AS A NEW ENTITY WITHIN THE INSTITUTE, WE DO WANT TO USE ALL OF THE MECHANISMS THAT ARE AVAILABLE TO US. EDUCATION AND TRAINING, WE WANT TO MAKE SURE THAT WE HAVE MENTORS IN THESE FIELDS TO HELP BUILD SKILLS AMONG EARLY CAREER INVESTIGATORS. AND CERTAINLY INNOVATION AND DISCOVERY. WE WANT TO ENCOURAGE AND INSPIRE HIGH RISK HIGH PAYOFF STUDIES. SO THROUGH ALL OF OUR EFFORTS OVER THE PAST YEAR, WE'VE MET POTENTIAL PARTNERS FROM VARIOUS INSTITUTES AND AGENCIES AND DISCIPLINES THAT WE MAY NOT HAVE CONSIDERED COLLABORATING WITH ON OUR OWN BUT THROUGH THESE LISTENING SESSIONS, WE'VE BEEN ABLE TO DO SO. WE'VE LEARNED ABOUT EXISTING PROGRAMS WHERE THERE MAY BE OPPORTUNITIES TO EXTEND OUR AREAS OF SCIENCE, TO FOCUS ON THE UNIQUE NEEDS OF PEDIATRIC POPULATIONS. WE'RE IDENTIFYING CRITICAL POINTS OF INTERSECTING GOALS AND PRIORITIES WHICH WE CAN LEVERAGE TO BUILD THE FIELD OF RESEARCH AND CALL ATTENTION TO THE UNDERSTUDIED YET CRITICALLY IMPORTANT AREAS. AND WHAT'S MOST IMPORTANT, I THINK, IS THAT THROUGH THE PRISM OF MULTIDISCIPLINEARITY, WE KEN VISION WAYS IN WHICH TO IDENTIFY, ADDRESS, AMELIORATE AND ULTIMATELY OVERCOME SOME OF THE CHALLENGES THAT WERE HERETOFORE DEEMED INTRACTABLE. SO GOING FORWARD, WE WILL SYNTHESIZE WHAT WE'VE LEARNED FROM THE LISTENING TOURS, WE'LL DEVISE A STRATEGIC PLAN THAT WE WILL SHARE WITH YOU WHEN IT'S DONE, HOPEFULLY BY JANUARY COUNCIL, AND WE HAVE ANOINTED AMBASSADORS WITHIN OUR FIELD TO CARRY THIS MESSAGE WITH US AND FOR US AND WE INVITE YOU TO JOIN IN WITH US AS WE PURSUE OUR GOALS AND PRIORITIES. THANK YOU FOR YOUR TIME AND ATTENTION. [APPLAUSE] >> THANK YOU SO MUCH, VALERIE. I WOULD INVITE ANY QUESTIONS, EITHER OF MY PRESENTATION OR VALERIE'S. DR. JENKINS. >> THANK YOU VERY MUCH FOR BOTH YOUR PRESENTATIONS. VERY EXCITING THINGS GOING ON. THIS -- OF REGISTRY IS REALLY INTRIGUING IN TERMS OF IF YOU CAN REALLY KIND OF GET A LARGER PARTICIPATION IN THAT. I DIDN'T KNOW IF YOU HAD LOOKED AT THE COMMUNITY COLLABORATIONS THAT MIGHT BE NECESSARY IN TERMS OF TRYING TO GET THE MOST AT RISK MOMS. AS WELL AS OBVIOUSLY THE TECHNOLOGY OPPORTUNITIES BECAUSE EVERYBODY HAS A CELL PHONE. SO I WOULD JUST BE -- HAS IT GONE THAT FAR WITH THAT MUCH SPECIFICITY? >> I LOVE YOUR ENTHUSIASM, AND I ECHO THE POTENTIAL. AND PART OF THE PROCESS WITH THIS FIRST MEETING IS TO SAY YES, HOW DO WE ENGAGE ALL OF THE COMMUNITIES THAT WE WANT TO ENGAGE, AND RECOGNIZING THAT IN FACT IT'S NOT REALLY GOING TO BE A COMPUTER BASED THING, ESPECIALLY IF YOU WANT DAILY INPUT OR WEEKLY INPUT. THIS IS GOING TO NEED TO BE KIND OF THAT AT BASED CELL PHONE BASED TYPE SYSTEM, WHICH IS DIFFERENT TO SOME DEGREE THAN DC CONNECT. NOW WE HAVE WONDERFUL PEOPLE AT NICHD HELPING US WITH THIS, STEPHANIE ARCHER AND SUE WHO HAVE SOME OF THAT KNOWLEDGE, AND RECOGNIZE THAT THAT IS REALLY CRITICAL. BUT PART OF THE MEETING THAT WE'LL BE HOLDING IS TO START THAT PROCESS, SO NO, WE ARE NOT AT THAT LEVEL, ALTHOUGH WITH DO HAVE THAT IN MIND THAT THOSE ARE KEY ISSUES. THANK YOU SO MUCH. >> THANK YOU. NEXT I'D LIKE TO INTRODUCE BRIAN CLARKE WHO'S CHIEF OF OUR GRANTS MANAGEMENT BRANCH WHO'S GOING TO REVIEW COUNCIL OPERATING PROCEDURES, COUNCILMEMBERS WILL CALL THE PREVIOUSLY A DRAFT STATEMENT OF UNDERSTANDING WAS PROVIDED ON THE COUNCILMEMBER WEBSITE. BRIAN, WELCOME. BRYAN, WELCOME. >> ALL RIGHT. GOOD MORNING. AS REQUIRED, I'LL PRESENT THE ANNUAL REVIEW OF THE STATEMENT OF UNDERSTANDING, AND I EMPHASIZE THE WORD REQUIRED SINCE I DON'T KNOW IF WE OTHERWISE PUT YOU THROUGH THIS, BUT I HOPE YOU FIND IT HELPFUL. THE STATEMENT OF UNDERSTANDING IS BASICALLY A DOCUMENT ABOUT THE COUNCIL OPERATIONS, AND AS COUNCILMEMBERS, COUNCIL IS CHARGED WITH THE RESPONSIBILITY OF ADVISING RNG CONSULTING WITH AND MAKING RECOMMENDATIONS TO THE DIRECTOR OF NICHD ON MATTERS RELATING TO THE RESEARCH AND RESEARCH ACTIVITIES AND FUNCTIONS OF THE INSTITUTE. THE ROLES AND RESPONSIBILITIES OF COUNCILMEMBERS INCLUDE SECONDARY REVIEW OF GRANT APPLICATIONS. I'LL REVIEW THE SECTIONS OF THE STATEMENT OF UNDERSTANDING BRIEFLY TO GO THROUGH THIS WITH YOU. THE COUNCILMEMBERSHIP AND STRUCTURE IS THE FIRST SECTION AND IT INCLUDES THOSE ALSO THAT ARE NON-VOTING EX-OFFICIO MEMBERS. I WON'T GO THROUGH THAT ENTIRELY, YOU CAN LOOK AT THAT TO SEE THE DETAILS OF THAT. I WILL POINT OUT THERE IS AN AD HOC WORK GROUP THAT'S INCLUDED IN THE MEMBERSHIP AND STRUCTURE. WE DON'T NAME THOSE WORK GROUPS BECAUSE THEY DO CHANGE. RIGHT NOW WE HAVE CURRENTLY THE NCMRR WORK GROUP THAT MANY OF YOU ARE A SUBSET OF COUNCIL IS THAT -- A WORK GROUP FOR NCMRR REVIEW AND REVIEW PRIOR TO THIS COUNCIL. THE SECOND SECTION IS THE SECONDARY REVIEW OF GRANT APPLICATIONS, AND THE FOLLOW BEING ACTIONS ARE CONSIDERED INDIVIDUALLY BY COUNCIL. THEY ARE MERIT AWARDS, MERIT EXTENSIONS, ALSO THE FOREIGN INSTITUTIONS, ALSO THOSE GRANTS THAT ARE TRANSFERRING TO A FOREIGN INSTITUTION OR BETWEEN FOREIGN INSTITUTIONS, RECOMMENDATIONS OF COFUNDING, ALSO THE REVIEW OF RFAs, SUMMARY STATEMENTS OF SPECIAL INTEREST, GOING -- SPECIAL POLICY ISSUES, I'M SORRY, APPLICATIONS OF HIGH PROGRAM PRIORITY, ALSO THOSE OF LOW PROGRAM PRIORITY. AND APPLICATIONS FROM P.I. INVESTIGATORS WITH TOTAL NIH GRANT SUPPORT ALREADY IN EXCESS OF $1 MILLION PER YEE DIRECT COST. THIS IS NEW AS OF LAST YEAR. THE NEXT SECTION IS ADMINISTRATIVE DECISIONS AND ACTIONS THAT DO NOT REQUIRE COUNCIL RECOMMENDATION. SOME OF THESE ARE CHANGE OF P.I., CHANGE OF PRINCIPAL -- CHANGE OF INSTITUTION, APPLICATIONS DEFERRED FOR RE-REVIEW PRIOR TO THE COUNCIL MEETING. THE FOURTH SECTION ARE THE OPTIONS OPEN TO COUNCIL. THEY ARE CONCURRENCE WITH THE SRG RECOMMENDATION, NON-CONCURRENCE WITH THE SRG RECOMMENDATION BASED ON SCIENTIFIC TECHNICAL MERIT OR NON-CONCURRENCE WITH SRG RECOMMENDATION BASED ON FACTORS OTHER THAN SCIENTIFIC MERIT. RECOMMENDATIONS OF HIGH PROGRAM PRIORITY, U.S. COUNCILMEMBERS CAN RECOMMEND APPLICATIONS FOR HIGH PROGRAM PRIORITY OR LOW PROGRAM PRIORITY. YOU ALSO MAY DEFER TO OBTAIN ADDITIONAL INFORMATION FOR COUNCIL CONSIDERATION AT A SUBSEQUENT MEETING. WE ALSO HAVE A SECTION ON EXPEDITED REVIEW. WE HAVEN'T USED THIS IN A NUMBER OF YEARS BASED ON THE PAY LINES, LOWER PAY LINES, BECAUSE WITH THE -- REVIEW, WHAT OCCURS IS THAT THOSE THAT ARE AT THE HIGHER PRIORITY ARE REVIEWED PRIOR TO COUNCIL AND AWARDED PRIOR TO COUNCIL. WE HAVEN'T EXERCISED THIS, BUT IT IS STILL INCLUDED AS AN OPTION FOR THE INSTITUTE. INTERIM REVIEW IS THE NEXT SECTION, AS I STATED NCMRR, WE HAVE THE INTERIM REVIEW OF THOSE APPLICATIONS, ALSO WE USED THIS IN OTHER INSTANCES WHERE THERE'S A NEED FOR AN INTERIM REVIEW BETWEEN COUNCILS. AND THEN THE NEXT SECTION IS CONCEPT REVIEW. THIS OCCURS IN OPEN SESSION OF COUNCIL. AS COUNCILMEMBERS, YOU CAN EITHER AO APPROVE, DISAPPROVE OR APPROVAL WITH RECOMMENDATIONS FOR SPECIFIC MODIFICATIONS. THE LAST SECTION IS ON EMERGENCY PROCEDURES. AS YOU KNOW, WE DO HAVE THE ABILITY TO HAVE COUNCILMEMBERS ATTEND REMOTELY, WHICH HELPS WITH ANY POSSIBLE EMERGENCIES, MAYBE BUILDING EVACUATION, I DON'T KNOW. SO THAT'S THE LAST SECTION OF THE STATEMENT OF UNDERSTANDING. IF YOU HAVE ANY QUESTIONS. IF NOT, I BELIEVE WE NEED TO HAVE CONCURRENCE WITH THIS. >> EXACTLY. SO FIRST AROUND THE TABLE, THEN WE'LL GO TO THE PHONE. DO FOLKS -- IS THERE ANY OBJECTION TO CONCURRING? LET ME ASK IT THAT WAY. IS THERE ANYONE AROUND THE TABLE THAT WOULD LIKE NOT TO CONCUR TO ASK ANY QUESTIONS? I TAKE THAT AS CONCURRENCE OF THOSE PRESENT. ON THE PHONE AND ON VIDEO, THOSE OF YOU JOINING US TELEPHONICALLY, DO YOU HAVE ANY OBJECTION TO CONCURRING? >> NO OBJECTION. >> THANK YOU. HEARING NONE, WE HAVE CONCURRENCE FROM COUNCIL. THANK YOU, BRYAN. SO NEXT, WE HAVE FOUR CONCEPTS THAT WERE PRESENTED TO COUNCIL FOR YOUR REVIEW AND FOR DISCUSSION. FOR EACH, I WILL ASK PROGRAM STAFF TO COME JOIN US AT THE TABLE TO PROVIDE A BRIEF OVERVIEW OF THE INITIATIVE. AT THE END OF EACH INDIVIDUAL DISCUSSION, WE WILL ASK YOU, THE COUNCILMEMBERS, INCLUDING THE VIRTUAL MEMBERS, FOR ANY QUESTIONS, THOUGHTS YOU MIGHT HAVE, AND WHETHER OR NOT YOU CONCUR WITH GOING FORWARD WITH THESE CONCEPTS. THE FIRST OF THESE, LYNNE MOFFENSON WILL JOINS, THE ADOLESCENCE TRIALS NETWORK FOR HIV/AIDS INTERVENTIONS. LYNNE, WELCOME. HARD TO BELIEVE WE WON'T CONTINUE TO BE WELCOMING YOU. >> SO ALAN, I'D LIKE TO THANK YOU FOR THE QUARTER OF CENTURY TERMINOLOGY. THAT WILL REINFORCE MY DAUGHTER'S BELIEF THAT I STARTED WORKING WHEN THE DINOSAURS ROMEED THDINOSAURSROAMED THE EARTH. SO THIS REQUEST FOR APPLICATIONS IS FOR THE ADOLESCENT MEDICINE TRIALS NETWORK FOR HIV/AIDS INTERVENTIONS. IT'S A COMPETING RENEWAL USING THE COOPERATIVE AGREEMENT MECHANISM. WE HAVE TWO COFUNDING INSTITUTES, NIDA AND NIMH, AND BOTH ARE EXPECTED TO CONTINUE THEIR COFUNDING. SO AS YOU ALL KNOW, THERE'S A GROWING DOMESTIC AND GLOBAL HIV EPIDEMIC IN YOUTH WORLDWIDE AND ESTIMATED 5 MILLION YOUNG PEOPLE AGE 15 TO 24 LIVING WITH HIV, AND IN THE U.S., IMPORTANTLY, NEW HIV INFECTIONS AMONG MINORITY YOUTH COMPRISE MORE THAN A QUARTER OF ALL NEW INFECTIONS. AND THE SCIENTIFIC MISSION IS TO CONDUCT INDEPENDENT AND COLLABORATIVE RESEARCH TO EVALUATE PROMISING BEHAVIORAL, MICROBICIDE, PROPHYLACTIC, THERAPEUTIC AND VACCINE MODALITIES IN ADOLESCENTS AGED 12 TO 24 YEARS, WITH HIV INFECTION, AND THOSE AT RISK OF HIV INFECTION. IT'S ANTICIPATED WITH THIS RENEWAL THE NUMBER OF DOMESTIC ATN SITES WILL LIKELY DECREASE FROM THE CURRENT 14 TO 10 TO 12 SITES. AND A LIMITED INTERNATIONAL EXPANSION OF ACTIVITIES IN RESOURCE LIMITED COUNTRIES IS PLANNED TO DEVELOP ONE PROTOCOL AND IF THIS IS SUCCESSFUL, IT WOULD BE A PRELUDE TO FURTHER INTERNATIONAL EXPANSION. ATN IS THE SOLE HIV NETWORK FOCUSED EXCLUSIVELY ON YOUTH, BOTH DOMESTICALLY AS WELL AS ANYPLACE. THEY HAVE HAD EXTENSIVE EXPERIENCE OVER 26,000 ENROLLMENTS, 88 ATN STUDIES OVER 10 YEARS, RETENTION OVER 90%, 134 MANUSCRIPTS. THEY'RE DOING VERY WELL. THEY HAVE ALSO SUCCESSFULLY FORGED A NUMBER OF COLLABORATIONS WITH THE CDC, WITH HRSA AND THE OTHER NIAID AND NICHD-FUNDED NETWORKS AND HAVE 12 COENDORSED COLLABORATING PROTOCOLS. SO THIS IS REALLY AN RFA TO CONTINUE SUPPORT FOR THE INFRASTRUCTURE REQUIRED FOR THE ADOLESCENT TRIALS NETWORK. AND I'LL ANSWER ANY QUESTIONS. >> SEEING AND HEARING NO QUESTIONS, DO COUNCILMEMBERS CONCUR? >> YES. >> I SEE LOTS OF HEAD NODDING. >> IN FULL DISCLOSURE, I'M AN ADOLESCENT MEDICINE DOC, AND I THINK THE POINT THAT YOU MADE ABOUT BEING THE ONLY NETWORK THAT IS REALLY LOOKING AT ADOLESCENTS, I THINK WHEN WE THINK OF NICHD CHILDREN BEING NOT ALWAYS PAID ATTENTION TO IN TERMS OF TRIALS, ADOLESCENTS ARE COMPLETELY NEGLECTED. AND SO THIS IS REALLY SO IMPORTANT. I HOPE THAT WE'D STRONGLY AND ENTHUSIASTICALLY CONCUR. >> THANK YOU FOR DECLARING YOUR BIAS, AND RISING ABOVE THAT TO GIVE US WISDOM AT THE SAME TIME. YOU'RE ABSOLUTELY RIGHT. THANK YOU. NEXT, THE WOMEN'S REPRODUCTIVE HEALTH RESEARCH, CAREER DEVELOPMENT PROGRAM. STELLA. >> GOOD MORNING. THIS PARTICULAR CONCEPT CLEARANCE IS FOR A REQUEST FOR APPLICATION WITH SETASIDE FOR THE WOMEN'S REPRODUCTIVE HEALTH RESEARCH CAREER DEVELOPMENT PROGRAM. USES THE K-12 PHYSICIAN SCIENTIST AWARD PROGRAM GRANT MECHANISM. I'M GOING TO ABBREVIATE IT TO WRHR. SO THE PROGRAM WAS INITIATED BY NICHD IN 1998 IN RESPONSE TO CONCERNS ABOUT THE NEED FOR GREATER NUMBERS OF OB-GYN PHYSICIAN SCIENTISTS AND WOMEN'S REPRODUCTIVE HEALTH. THE PURPOSE OF THE RFA IS TO CONTINUE ONGOING EFFORTS TO EXPAND THE COHORT OF PHYSICIAN SCIENTISTS THAT WILL MEET THE NEED FOR HIGHLY SKILLED INVESTIGATORS WITH A CLINICAL BACKGROUND WHO CAN ADDRESS THE INCREASING RESEARCH OPPORTUNITIES. THE SCOPE OF THE PROGRAM ENCOMPASSES ALL AREAS OF OB-GYN RESEARCH. THE EMPHASIS IS ON BASIC SCIENCE, TRANSITIONAL CLINICAL SECH, OH ON SCIENTIFIC AREAS IN OBSTETRICS AND GYNECOLOGY AND SUBSPECIALTIES INCLUDING MATERNAL AND FETAL MEDICINE, REPRODUCTIVE ENDOCRINOLOGY AND INFERTILITY AND FEMALE PELVIC MEDICINE AND RECONSTRUCTIVE SURGERY. APPROXIMATELY 211 OB-GYN JAWN YOUR FAK ALL THE HAVE BEEN APPOINTED TO THE PROGRAM AS OF MAY 2013. THERE ARE FOUR OBJECTIVES OF THE PROGRAM. THE FIRST, TO BRIDGE CLINICAL TRAINING WITH ADVANCED RESEARCH CAREER DEVELOPMENT TO PROVIDE OB-GYN JUNIOR FACULTY WITH STATE OF THE ART TRAINING IN WOMEN'S REPRODUCTIVE HEALTH RESEARCH IN AN ACADEMIC DEPARTMENT, TO STIMULATE WOMEN'S REPRODUCTIVE HEALTH RESEARCH OVER A VARIETY OF DISCIPLINES AND TO DELIVER A MENTORED RESEARCH EXPERIENCE FOR OB-GYN JUNIOR FACULTY LEADING TO A CAREER AS AN INDEPENDENT INVESTIGATOR. >> COUNCILMEMBERS, ANY QUESTIONS? IN THAT CASE, DO YOU CONCUR WITH THIS CONCEPT CLEARANCE? I SEE GENERAL HEAD NODDING. HEARING NOTHING GIVEN FROM THE PHONE, I'LL ASSUME YOU CONCUR AS WELL. SO NEXT IS THE PERINATAL CARE PARTNERSHIP REDUCING DISPARITIES AND IMPROVING OUTCOMES IN MOTHERS AND INFANTS. THE LONGEST WITHOUT AN ACRONYM AT NICHD. >> CAN YOU ALL HEAR ME? MAYBE I CAN COME A LITTLE CLOSER. GOOD MORNING. I WANT TO BRIEFLY DESCRIBE FOR YOU A PARTNERSHIP THAT NIH IS ENTERING INTO WITH PCORI, THE PATIENT CENTERS OUTCOMES RESEARCH INTEUT, WHICH AS MANY OF YOU KNOW IS A GOVERNMENTALLY AUTHORIZED BUT NOT GOVERNMENTAL ORGANIZATION TASKED WITH INCREASING OUR UTILIZATION OF COMPARATIVE EFFECTIVENESS RESEARCH. IN PCORI AND NIH, PARTICULARLY NICHD AND NINR, THE NURSING INSTITUTE, ARE VERY INTERESTED OF COURSE IN PERINATAL OU OUTCOMES AND ESPECIALLY FACT THAT THOUGH WE'VE MADE SOME PROGRESS, FOR EXAMPLE N DECREASING RATES OF PRETERM BIRTH, STUBBORN RACIAL AND ETHNIC DISPARITIES IN PERINATAL OUTCOMES PERSIST. SO IN PARTNERSHIP WITH PE CORY WE WANT TO LAUNCH AN INITIATIVE THAT WILL BEGIN TO ADDRESS THESE ISSUES ON A FAIRLY LARGE SCALE. SO WE'D LIKE TO SOLICIT IN THE UO1 MECHANISM APPLICATIONS FOR ONE OR TWO CLINICAL TRIALS THAT WILL TEST MULTILEVEL, MEANING EVERYWHERE FROM WITHIN A DOCTOR'S OFFICE TO WITHIN A WOMAN'S COMMUNITY TO LARGER POLICY ISSUES, AND MULTICOMPONENT, SO NOT JUST ONE PILL, FOR EXAMPLE, WITH PREGNANCY, PU MANY DIFFERENT APPROACHES, TO TEST THOSE IN GROUPS OF WOMEN TO SEE IF WE CAN REDUCE THE DISPARITIES AND IMPROVE PERINATAL OUTCOMES FOR MOTHERS AND CHILDREN. >> ANY QUESTIONS FOR CAROLINE? IN THAT CASE, DO YOU CONCUR? >> I CONCUR. >> THANK YOU. >> THANK YOU. >> VERY MUCH. THANK YOU, CAROLINE. WE HAVE ONE MORE FINAL CONCEPT IS PRESENTED BY KATRINA SALU. SHE WILL SPEAK ABOUT THE USE OF 3D PRINTER WITH PRODUCTION OF MEDICAL DEVICES. >> SO THIS IS FOR USE OF 3D PRINTERS FOR THE PRODUCTION OF MEDICAL DEVICES. THIS IS PROPOSED AS A SMALL BUSINESS INITIATIVE GRANT SUBMISSION. THE NEED FOR THIS WAS HIGHLIGHTED AT A RECENT FDA MEETING ON MEDICAL DEVICES FOR PEDIATRIC RARE DISEASES, AND AT THAT MEETING, BOTH PROVIDERS AND PARENTS RECOUNTED THEIR STORIES OF DIFFICULTIES IN OBTAINING SEEMINGLY ROUTINE MEDICAL DEVICES LIKE OXYGEN MASKS, DRAINAGE CATHETERS, VARIETY OF DIFFERENT PIECES OF EQUIPMENT IN CUSTOM SIZES FOR SMALL INFANTS. THERE WERE SEVERAL CASES PRESENTED OF MEDICAL DISASTERS THAT ENSUED FROM JERRY RIGGED SOLUTIONS USING CUT DOWN ADULT DEVICES. THIS NEED HAS BEEN PRETTED NUMEROUS TIMES, POSITION PAPERS AND ATTEMPTS TO ENTICE MANUFACTURERS TO PROVIDE THESE MEDICAL DEVICES. THE PROBLEM IS THEY'RE NEEDED IN CUSTOM SIZES AND SUCH SMALL QUANTITIES THAT IT'S NOT A FEASIBLE BUSINESS MODEL FOR MANUFACTURERS AND THESE DEVICES OF FINITE SHELF LIFE SO PROVIDERS CAN'T AFFORD TO STOCK THE VAST NUMBER OF SIZES THAT WOULD NEED TO BE AVAILABLE. SO KATARINA AND ANN ZAJAK AND I HAD A NUMBER OF DISCUSSIONS WITH OUR COLLEAGUES AT FDA, AND WHAT WE'RE PROPOSING IS AN INITIATIVE TO PROMOTE THE DEVELOPMENT OF 3D PRINTERS FOR CUSTOM PRODUCTION OF THESE DEVICES, 3D PRINTERS CAN PRODUCE EVEN QUITE COMPLICATED DEVICES IN RELATIVELY SHORT TIME, YOU CAN LASER-SCAN THE DIMENSIONS VERY QUICKLY. THE PROBLEM IS THERE ARE NO DEVICES FROM CURRENTLY PRODUCING MEDICAL GRADE PLASTICS. OUR COLLEAGUES IN FDA, AT LEAST WHILE THEY COULDN'T DIRECTLY TELL US WHAT WAS GOING ON, THEY DIDN'T INDICATE THAT THERE WAS ANYTHING IN THE PIPELINE. DEVELOPMENT OF 3 DID PRINTERS AND POLYMERS THAT CAN PRODUCE MEDICAL GRADE PLASTICS, TO CONFIRM BIOCOMPATIBILITY AND STERILIZABILITY AND DEVELOPMENT OF APPROVED FDA PROCEDURES TO ENSURE MECHANICAL AND -- PERFORMANCE FOR DIFFERENT MEDICAL AM CASES. WE'VE WORKED WITH OUR COLLEAGUES AT FDA SO THAT THEY'RE HAPPY WITH THE KINDS OF LANGUAGE WE'RE PROPOSING. LET ME EMPHASIZE WE'RE NOT PROPOSING HERE THAT WE WOULD SUPPORT THE DEVELOPMENT OF SOMETHING AS COMPLEX AS HEART VALVES FOR IMPLEMENTATION FOR 3D PRINTING THERE'SLY QUITE A STEP IN THE FUTURE. WHAT WE'RE THINKING ABOUT HERE ARE THINGS LIKE G TUBES, OXYGEN MASKS, CATHETERS, OTHER RELATIVELY SIMPLE MEDICAL DEVICES THAT MAY BE NEEDED IN CUSTOM SIZES >> THANK YOU, KATARINA. [LAUGHTER] ANY THOUGHTS, DISCUSSIONS? GEORGE. >> I'D LIKE TO BRING UP IT WOULD ALSO BE VERY IMPORTANT FOR FETAL PROCEDURES RIGHT NOW, THE SHUNTS WE USE, THE TRACHEAL BALLOONS ARE ALSO NOT FOR FETUSES. >> RIGHT. >> THANKS, MIKE. THIS WAS A GREAT INITIATIVE. I KNOW THE FDA IS UNDERGOING INTERNAL RESEARCH. THEY'VE ALLOCATED FUNDS TO DO RESEARCH FOR PRINTING ON 3D AS WELL. IS IT GOING TO BE A REQUIREMENT OF ANY APPLICATION TO SUCH AN RFA THAT THEY HAVE TO WORK WITH THE FDA OR THAT THE FDA HAS TO BE A PART OF THE PROCESS BECAUSE OTHERWISE YOU GOT APPROVAL ISSUES. >> YEAH, WHAT WE IN OUR DRAFT LANGUAGE, WE HAVE ALREADY INDICATED THE SECTIONS THAT APPLICANTS SHOULD REFERENCE BY FDA. SO THAT'S IN OUR DRAFT LANGUAGE, THE SECTIONS THAT APPLICANTS WOULD HAVE TO CONSULT. THE FDA IS HOLDING A WORKSHOP IN OCTOBER ON 3D PRINTERS, AND THEY ARE COMING OUT WITH GUIDANCE SOMETIME OR AT LEAST THEY INTEND TO COME OUT WITH GUIDANCE SOMETIME THIS WINTER. SO WE WILL BE ENCOURAGING IN THE STRONGEST POSSIBLE WAY. THE FDA IS NOT VERY COMFORTABLE WITH US PUTTING A DIRECT REQUIREMENT IN THE LANGUAGE, BUT WE'RE GOING TO ENCOURAGE THAT APPLICANTS WORK WITH THE FDA AS STRONG AS WE POSSIBLY CAN WITHOUT CAUSING FDA HEARTBURN. >> GREAT. AND JUST A QUICK FOLLOW-ON FOR THOSE THAT DON'T KNOW, THE FDA FUNDS A NETWORK OF -- CALLED THE PEDIATRIC DEVICE CONSORTIUM, WHICH IS SEVEN CENTERS NOW THAT ARE -- SPECIFICALLY IT'S A PUBLIC FUNDED OPPORTUNITY TO HELP MANUFACTURERS DEVELOP TECHNOLOGIES FOR PEDIATRIC USE SPECIFICALLY, BECAUSE IT'S SUCH A CHALLENGING ENVIRONMENT FOR MAKING MONEY IN THE INDUSTRIAL SIDE OF IT. SO I'M P.I. OF ONE OF THOSE CENTERS, THE NEW ENGLAND PEDIATRIC DEVICE CONSORTIUM. WE'RE TRYING VERY HARD TO INTERFACE. SO IF YOU HAVE TECHNOLOGIES AND PRODUCTS THAT ARE AIMED AT THE PEDIATRIC COMMUNITY AND FOR WHICH YOU OR YOUR COLLEAGUES NEED ASSISTANCE IN DEVELOPING THOSE PUBLIC FUNDING AVAILABLE TO HELP YOU AND HELP THEM TO ACTUALLY DEVELOP THESE TECHNOLOGIES. THIS IS A GREAT OPPORTUNITY TO EXPAND THAT. >> I REMEMBER SEEING IMPROVIZATION THAT GOES ON IN NEONATAL AND PEDIATRICIAN DRIK INTENSIVE CARE UNITS. I'D JUST LIKE TO ASK FOR CLARIFICATION BECAUSE WHEN I READ THE OBJECTIVES, IT ALSO TALKS ABOUT LONG TERM DEVICES INCLUDING HEART VALVES, BUT YOU MADE A COMMENT SAYING THAT THOSE ARE OUT OF SCOPE. >> YES, WE LISTED WHAT WE THOUGHT WERE POSSIBLE APPLICATIONS, BUT WE INTEND -- WE'RE GOING TO STRONGLY ENCOURAGE APPLICANTS TO FOCUS ON ITEMS FOR SHORT TERM IMPLANTATION AND RELATIVELY NONINVASIVE DEVICES BECAUSE THE BIOCOMPATIBILITY TESTING, THE MECHANICAL TESTING, IS GOING TO BE MUCH MORE EXTENSIVE FOR DEVICES THAT REQUIRE LONG TERM IMPLANTATION AND WE'D LIKE TO GET THIS TECHNOLOGY MOVING AND GET PRACTICAL APPLICATIONS. I THINK ULTIMATELY, WE PROBABLY ARE GOING TO PRODUCE ARTIFICIAL HEART VALVES WITH THIS KIND OF TECHNOLOGY, BUT THE MECHANICAL TESTING BIOCOMPATIBILITY TESTING, THAT'S GOING TO TAKE MANY YEARS TO REALLY GET THAT UNDERWAY. >> IF I CAN ASK ANOTHER QUESTION, WHAT IS REALLY THE LONG TERM GOAL, IS TO HAVE A HUB SYSTEM WHERE THERE IS A GMP FACILITY THAT PRODUCES THINGS, CUSTOMIZES NEEDED AND SHIP IT OVERNIGHT, WHICH SOMETIMES MAY TAKE WAY TOO MUCH TIME OR TO HAVE AT LEAST MAJOR TERTIARY CARE CENTERS HAVE THEIR OWN ON SITE SORT OF PRINTING FACILITY. >> SO THE WAY I HAVE IMAGINED THIS, AND I'VE TALKED WITH KATARINA AND ANN ABOUT THIS, IS THAT MAJOR TERTIARY SN TERES WOULD HAVE A 3D PRINTER AND WORK WITH THEIR -- THAT WOULD BE AVAILABLE TO MAKE THESE DEVICES AS NEEDED. NOW I DON'T ANTICIPATE THAT A 3D PRINTER WOULD BE ON THE CRASH CART, SO THIS TAKES SOME TIME TO MAKE ONE OF THESE DEVICES AND THEY'RE NOT GOING TO BE AVAILABLE INSTANTLY. NOW AN ALTERNATIVE POSSIBILITY IS IN A MAJOR METROPOLITAN AREA, YOU COULD HAVE A SINGLE PROVIDER MANUFACTURER DISTRIBUTOR MAKING THESE DEVICES AND THEN JEFF BEZOS'S DRONES COULD DELIVER THEM ON DEMAND TO MEDICAL CENTERS AS NEEDED. SO YOU KNOW THERE ARE LOTS OF DIFFERENT POSSIBILITIES. >> ANY OTHER QUESTIONS, DISCUSSION? DO YOU CONCUR IN THAT CASE? LOTS OF CONCURRENCE. THANK YOU VERY MUCH. >> I CONCUR. >> SO NEXT, WERE IT NOT FOR THE FACT THAT THIS IS SOMEWHAT OF A BITTERSWEET OPPORTUNITY TO DO SO WOULD BE AN UNADULTERATED PLEASURE FOR ME TO INTRODUCE TO SOME OF YOU, THOUGH I THINK VERY FEW OF YOU BUT WELCOME TO THE PODIUM MEE PREDECESSOR AS NICHD DIRECTOR, DUANE ALEXANDER. DUANE, US AS YOU KNOW, CAME TO NICHD A FAIR NUMBER OF YEARS AGO, SERVED FOR ABOUT 10 YEARS IN VARIOUS ROLES BEFORE BEING APPOINTED IN 1984 AS THE DIRECTOR OF NICHD, AND REMAINED FOR ALMOST A QUARTER CENTURY BEFORE IN DECEMBER OF 2009, STEPPING DOWN TO ASSUME A ROLE AT THE FOGARTY ADVISING THEM ON GLOBAL MATERNAL CHILD HEALTH. DUANE OBVIOUSLY CONTRIBUTED SO MUCH TO NICHD. I THINK UNARGUABLY THE PERSON WHO HAS LEFT THE LARGEST IMPRINT UPON WHO WE ARE AND HOW WE THINK ABOUT THINGS, WHAT WE FOCUS ON, ET CETERA, BUT WE'VE ASKED HIM HERE TODAY TO SPEAK ABOUT SOMEBODY WHO IS ARGUABLY THE SECOND LEADING PERSON TO MAKE THAT KIND OF IMPRINT, AND THAT'S BOB COOKE. WE'VE ASKED DUANE TO DO SO PARTLY BECAUSE DUANE GRADUATED FROM MEDICAL SCHOOL AT HOPKINS, DID TRAINING IN INTELLECTUAL DISABILITY, CERTAINLY THE AREA HIS RESEARCH IS MOST RENOWNED FOR, BUT ALSO WHICH I THINK INFORMED HIS THINKING AS DIRECTOR OF NICHD. IT'S ONE OF THE REASONS WHY WE HAVE CONTINUED TO HAVE SUCH A CORE PART OF OUR MISSION BE THE LIVES AND WELLBEING OF THOSE WITH INTELLECTUAL AND OTHER DISABILITIES. BUT IN HIS TIME AT HOPKINS, DUANE CERTAINLY BECAME A GOOD FRIEND, TRAINEE, COLLEAGUE, ET CETERA, OF BOB COOKE, SO WE'VE ASKED DUANE TO JUST SHARE WITH US SOME OF HIS THOUGHTS AND REMEMBRANCES OF DR. COOKE. DUANE, IT'S GREAT TO HAVE YOU HERE. [APPLAUSE] >> ALAN, THANK YOU VERY MUCH. IT REALLY IS A PLEASURE TO COME BACK, BUT IT'S A PARTICULARLY APPROPRIATE AND I THINK JOY TO COME BACK TO RECALL THE CONTRIBUTIONS OF DR. ROBERT E. COOKE TO PEDIATRICS IN GENERAL, AND TO MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIES IN PARTICULAR. ON FEBRUARY 2ND OF THIS YEAR, THE WORLD'S CHILDREN LOST ONE OF THEIR GREATEST BENEFACTORS AND CHAMPIONS. DR. ROBERT E. COOKE. HIS DEATH AT AGE 93 AT HIS MARTHA'S VINEYARD HOME WAS MARKED BRIEFLY IN SEVERAL OBITUARIES ATTEMPTING TO CAPTURE THE BREADTH AND SIGNIFICANCE OF THIS ONE PERSON'S CONTRIBUTIONS TO IMPROVING CHILDREN'S HEALTH AND WELL-BEING. BUT THE WRITERS FELL SHORT. IT WAS IN THIS CONTEXT THAT I ASKED ALAN AND YVONNE IF I MIGHT HAVE A FEW MINUTES ON THE AGENDA FOR THE NEXT COUNCIL MEETING TO PAY TRIBUTE TO DR. COOKE AND HIS CONTRIBUTIONS PARTICULARLY AS THE FATHER OF THIS INSTITUTE. AND THEY GRACIOUSLY SAID YES. DR. ROBERT E. COOKE WAS BORN IN 1920 IN MASSACHUSETTS. HIS FATHER WAS AN INSURANCE EXECUTIVE. RECOGNIZING HIS INTEREST IN SCIENCE EARLY, HE ATTENDED THE SHEFFIELD SCIENTIFIC SCHOOL AT YALE. AND GRADUATED IN 1941, RECEIVING HIS MEDICAL DEGREE FROM YALE THREE YEARS LATER, AND DOING MILITARY SERVICE IN THE ARMY. HE COMPLETED HIS RESIDENCY IN PEDIATRICS WHILE DOING RESEARCH WITH OUTSTANDING MENTORS DARROW AND MENTAL ON DIARRHEA AND DEHYDRATION, THE LEADING CAUSE OF DEATH IN INFANTS AND YOUNG CHILDREN. IN DEVELOPING -- AND DEVELOPED COUNTRIES BOTH. HE PLACED INFANTS WITH DIARRHEA AND VOPTIN VOMITING ON A METABOLIC BED THAT CAPTURED ALL THE OUTPUTS AND ALL THE INPUTS THAT THE CHILDREN HAD, DETERMINING WHAT WAS NEEDED FOR REPLACEMENT IN THE ELECTROLYTE AND SUGAR ARENAS. USE OF THESE REHYDRATION FLUIDS AND REPLACEMENT FLUIDS INITIALLY BY I.V. ADMINISTRATION AND LATER BY ORAL AS WELL, PROVIDED SAFE, INEXPENSIVE, EASY TO USE AND EFFECTIVE TREATMENT THAT REVERSED THE CAUSE OF THIS CONDITION. THE SOLUTION WAS SOLD DOMESTICALLY AS PEDIATRICIA PEDIALYTE AND DISTRIBUTED IN POWDER AS ORT, ORAL REPLACEMENT THERAPY, AND HAS REVOLUTIONIZED THE CARE AND OUTCOMES FOR INFANTS WITH THESE DISORDERS. TREATMENT IS ESTIMATED TO SAVE ABOUT A MILLION LIVES OF INFANTS AND CHILDREN EVERY YEAR GLOBALLY. COOKE'S ROLE ON THIS TEAM THAT DEVELOPED THE TREATMENT BROUGHT HIM EARLY RECOGNITION AND ACCLAIM, AND IN 1955, AT THE AGE OF 35, HE WAS RECRUITED TO BALTIMORE TO CHAIR THE TOP PEDIATRICS DEPARTMENT IN THE COUNTRY AT JOHNS HOPKINS. THE POSITION GAVE HIM THE BASE FOR CHALLENGING OLD CONCEPTS AND INTRODUCING NEW ONES. THESE ACCOMPLISHMENTS ALONE WOULD HAVE ASSURED PERMANENT RECOGNITION FOR DR. COOKE IN PEDIATRIC HISTORY BUT EVEN GREATER ROLES LAY AHEAD. DR. COOKE AND HIS WIFE HAD FOUR CHILDREN, TWO OF WHOM WERE SEVERELY MENTALLY AND PHYSICALLY HANDICAPPED, DUE TO KREE DESHAW SYNDROME, A CHROMOSOME DELETION DISORDER. REJECTING THE STANDARD PRACTICE OF THE TIME, WHICH WAS TO PLACE SUCH CHILDREN IN INSTITUTIONS, BECAUSE NOTHING COULD BE DONE FOR THEM, AND GETTING ON WITH THE REST OF THEIR LIVES FOR THE PARENTS, DR. COOKE AND HIS WIFE CHOSE TO KEEP THE TWO GIRLS AT HOME AND CARE FOR THEM THERE, AS PART OF THEIR FAMILY. THIS POSITION BROUGHT RIDICULE AND DIVISION FROM MUCH OF THE MEDICAL COMMUNITY BUT RESPENT AND ADMIRATION FROM THE SMALL BUT GROWING ADVOCACY COMMUNITY. IT ALSO BROUGHT CONTACT WITH THE KENNEDY AND SHRIVER FAMILIES, ESPECIALLY FROM EUNICE, WHO PROVIDED MUCH OF THE CARE OF HER HANDICAPPED SISTER ROSEMARY. THE MEDICAL COMMUNITY SHARED IN TREATING THESE INDIVIDUALS AS OUTCASTS, OFTEN CALLED GORKS, WHO DESERVED NO TREATMENT BECAUSE THERE WAS NOTHING TO HELP FOR AND NOTHING IN RETURN FOR ANY TREATMENT. THIS WAS THE WORLD THAT DR. COOK FACED IN THE 1950s AND 1960s AND THAT HE DECIDED TO CHALLENGE. ONE OF THE FIRST INITIATIVES WAS TO DIRECT MORE MEDICAL RESEARCH TO CHILDREN. AND PERSONS WITH MENTAL RETARDATION, WHATEVER THE AGE. DR. COOK TOLD ME ON SEVERAL OCCASIONS THAT HE BELIEVED THAT ONLY THE FEDERAL GOVERNMENT HAD THE RESOURCES AND CLOUT TO BRING ABOUT THE NECESSARY MEDICAL AND SOCIAL CHANGES FOR THESE PROBLEMS. IN RESEARCH FROM ALL THE NIH, FOR EXAMPLE, IN 1960, VIRTUALLY ALL RESEARCH WAS DIRECTED TO DISEASES AND CONDITIONS OF ADULTS, WITH NO STUDY SECTIONS FOCUSED ON CHILDREN. EMBLEMATIC OF THIS SITUATION WAS A SOLICITATION OUTSIDE THE NIH IN THE LATE 1950s FOR A NEW PROGRAM OF GENERAL CLINICAL RESEARCH CENTERS OR GCRCs. THIS WAS INTENDED TO PROVIDE TO THE EXTRAMURAL RESEARCH COMMUNITY WHAT HAD JUST BEEN PROVIDED BY THE INTRAMURAL ON CAMPUS FACILITY WITH THE NEW NIH CLINICAL CENTER. THE GRANTS WERE LIMITED TO DEPARTMENTS OF INTERNAL MEDICINE MEDICINE. OFFERED ONLY THERE, AND LEAVING NO RESOURCES FOR PEDIATRICS. PEDIATRICIANS NEED NOT APPLY. THIS ACTION SO ANGERED DR. COOKE THAT HE MADE AN APPOINTMENT TO SEE THE NIH DIRECTOR, DR. JIM SHANNON, TO PLEAD FOR OPENING THE GRANT OPPORTUNITY TO PEDIATRIC DEPARTMENTS AS WELL. ACCORDING TO DR. COOKE, DR. SHANNON PROMPTLY REJECTED THIS IDEA, SAYING THAT PEDIATRIC RESEARCH WAS UNNECESSARY BECAUSE CHILDREN WERE JUST SMALL ADULTS AND RESEARCH COULD BE DONE ON ADULTS AND EXTRAPOLATED TO CHILDREN. AND THAT WAS THE STANDARD RESPONSE. DR. COOKE LEFT BOTH DISSATISFIED AND ANGRY, AND DETERMINED TO TRY TO CHANGE THIS SITUATION. THE OPPORTUNITY CAME QUICKLY. AS DR. COOKE PUT IT, A FEW MONTHS LATER, A FRIEND OF HIS WAS ELECTED PRESIDENT. WHAT WE WOULD CALL TODAY TRANSITION TEAMS FOR THE NEW KENNEDY ADMINISTRATION WERE ESTABLISHED IN SEVERAL AREAS BUT NOTHING LIKE WE HAVE TODAY. THE TEAM ON HEALTH AND WELFARE, FOR EXAMPLE, OH ONLY HAD SIX MEMBER, BUT ONE OF THEM, THANKS TO EUNICE, WAS DR. COOKE. THE TEAM WAS CHAIRED BY WILBUR COHEN, ADVOCATE FOR MEDICARE, WHO LATER BECAME SECRETARY OF HEALTH EDUCATION AND WELFARE. THEY TRAVELED AT THEIR OWN EXPENSE, MOSTLY AT THE MAYFLOWER HOTEL HERE IN WASHINGTON, D.C. THEY PRODUCED THEIR OWN REPORT. WILBUR BROUGHT ALONG HIS OWN PORTABLE TYPEWRITER. HE TYPED IT HIMSELF. AND THAT WAS HOW IT WAS SUBMITTED. DESPITE THE CIRCUMSTANCES, DR. COOK SAW THIS AS AN OPPORTUNITY TO SELL AN IDEA THAT HE HAD COME UP WITH, ESTABLISHING A NEW INSTITUTE AT NIH FOCUSED ON CHILD HEALTH, INCLUDING MATERNAL AND PREGNANCY HEALTH. HE WOULD HAVE HIS OWN -- IT WOULD HAVE ITS OWN FUNDING LIKE THE OTHER NIH INSTITUTES AT THE TIME, AND WOULD INCLUDE A FOCUS FOR MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIES. THE OTHER TEAM MEMBERS, ESPECIALLY COHEN, WERE PERSUADED, AND THE RECOMMENDATION WENT FORWARD ALONG WITH THE RECOMMENDATION FOR MEDICARE AS PART OF THE TRANSITION TEAM'S REPORT. THE FIRST TEST WAS TO PRESENT THE REPORT AND RECOMMENDATIONS TO THE SECRETARY DESIGNATE OF HEW, ABRAHAM REUB COUGH, GOVERNOR OF CONNECTICUT AT THE TIME. HE SUPPORTED THE BASIC CONCEPT BUT EXPRESSED SKEPTICISM FOR THE NEW INSTITUTE. FORTUNATELY FOR COOKE, ALSO PRESENT IN THE BACK OF THE ROOM WAS TED SORENSEN. SORENSEN HAD THE JOB OF WRITING KENNEDY'S INAUGURAL ADDRESS THAT'S SO MEMORABLE. HE POINTED OUT THAT KENNEDY WAS GOING TO EMPHASIZE PASSING THE TORCH TO A NEW YOUNGER GENERATION WITH A YOUTHFUL VIGOROUS PRESIDENT, BUT THE ONLY HEALTH PROPOSAL COMING IN THE REPORT MIGHT HAVE BEEN JUST -- FOR THE ELDERLY. THE REPORT NEEDED POLITICAL BALANCE, WHICH WAS NICELY PROVIDED, SAID SORENSEN, BY THE CHILD HEALTH INSTITUTE PROPOSAL. THE POLITICAL BALANCE ARGUMENT CONVINCED RUBICOFF, AND TED SORENSEN WAS THE FIRST CHAMPION TO SAVE WHAT WOULD BECOME THE NICHD. LATER WHEN THE REPORT WENT TO THE PRESIDENT-ELECT, KENNEDY EXPRESSED CONCERN ABOUT THE EVENTUAL COST, BUT HIS SISTER EUNICE SPOKE UP AND SAID THAT RESEARCH RESULTS WOULD REDUCE COSTS IN THE LONG RUN, AND KENNEDY AGREED TO INCLUDE IT IN HIS FIRST HEALTH MESSAGE TO CONGRESS. EUNICE WAS THE SECOND ONE TO SAVE THIS INFANT INSTITUTE. THE NEXT STEP WAS PERSUADING CONGRESS. HERE DR. COO COOKE LINED UP THE ADVOCACY ORGANIZATIONS IN HEALTH, THE PTA, AS WELL AS PEDIATRIC AND OB-GYN PROFESSIONAL COMMUNITY WHO JOINED WITH EUNICE SHRIVER IN TESTIFYING BEFORE BOTH HOUSE AND SENATE COMMITTEES. THE BILL PASSED EASILY AND NICHD WAS ESTABLISHED WITH THE PRESIDENT'S SIGNATURE YOU SEE HERE IN THIS SLIDE IN OCTOBER OF 1962. YOU CAN SEE HIM PRESENTING THE PEN HE USED FOR THE SIGNATURE TO HIS SISTER EUNICE. THERE'S SOME OTHER PEOPLE RECOGNIZABLE THERE, LINDEN JOHNSON, BOB COOKE WAS THERE BUT HE DIDN'T MAKE IT INTO THE INDIVIDUAL PICTURE. WITH THE PRESIDENT'S SIGNATURE, THE FIRST COMPONENT OF THE PLAN FOR IMPROVING HEALTH OF PERSONS WITH M RSM DD WAS NOW IN PLACE. HE KEPT TABS ON THE IMPLEMENTATION AND PROGRESS OF THE NEW INSTITUTE FROM A PHYSICIAN AS A MEMBER OF THE FIRST NATIONAL ADVISORY COUNCIL. SO YOU'LL RECOGNIZE IN THE BACK PICTURE WHERE THE ARROW IS IN HIS SPORT JACKET, DR. COOKE, WHO WAS KEEPING A WATCH ON THE NEW INSTITUTE AS A PHYSICIAN, AS A MEMBER OF THE NATIONAL ADVISORY COUNCIL, THE FIRST ONE, FOR NICHD. BUT THERE WAS MORE TO COME. RESEARCH NEEDED WELL QUALIFIED AND TRAINED PHYSICIANS AND SIGNISTS TO CARRY IT OUT. HERE COOKE SUCCESSFULLY PROPOSED AND ADVOCATED ESTABLISHING 12 MENTAL RETARDATION RESEARCH CENTERS, CONSTRUCTED LARGELY BY FEDERAL FUNDS THAT WERE PROVIDED THROUGH THE NICHD AND BILLED AT -- THIS SHIFT IN RESEARCH AWAY FROM INSTITUTIONS ALONG WITH TRAINING OPPORTUNITIES UPGRADED THE QUALITY OF THE RESEARCH AND THE RESEARCHERS AND BROUGHT PATIENTS WITH INTERESTING CONDITIONS TO DIAGNOSIS AND TREATMENT INTO THE MEDICAL SCHOOLS. THESE PATIENTS WERE NOT ONLY INTERESTING, THEY WERE ALSO SUBJECTS FOR ACADEMIC STUDY, AND AS THAT OCCURRED, CARE OF THESE PATIENTS IMPROVED, AS DID RESPECT FOR THEM AS PEOPLE. AS DR. COOKE PUT IT IN A 1970s 1970s COMMENCEMENT ADDRESS AT HARVARD MEDICAL SCHOOL, "THE GORKS ARE GONE." THIRD WAS TRAINING OF PROFESSIONAL PERSONNEL BEYOND PHYSICIANS FOR CARE AND TREAT OF PERSONS WITH MRDD. TO FULFILL THIS ROLE, COOKE SUCCESSFULLY PROPOSED ESTABLISHING UNIVERSITY AFFILIATED FACILITIES, UAFs, CONSTRUCTED IN LARGE PART WITH FEDERAL FUNTS AND AGAIN LOCATED MAINLY AT MEDICAL SCHOOLS AND UNIVERSITIES RATHER THAN IN INSTITUTIONS. WITH TRAINING NOT ONLY OF PHYSICIANS BUT ALSO NURSES, HEARING AND SPEECH PATHOLOGISTS, PHYSICAL OCCUPATIONAL THERAPIST, TEACHERS AND CAREGIVERS. TODAY VIRTUALLY EVERY STATE HAS A UAF, BUT THE RESIDENTIAL INSTITUTIONS HAVE NEARLY DISAPPEARED. FOURTH WAS HEAD START. RECOGNIZING THAT THE LARGEST NUMBER OF CHILDREN WITH SUBPART IN -- WAS ASSOCIATED WITH POVERTY AND A NON-STIMULATING ENVIRONMENT, COOK PROPOSED TO SERGEANT SLIEF SHRIVER, NOW HEADING ANTIPOVERTY LEVELS IN THE JOHNSON ADMINISTRATION A NEW EARLY INTERVENTION PROGRAM CALLED HEAD START. THIS CONCEPT WAS SUPPORTED BY THE NATION'S LEADING CHILD DEVELOPMENT SPECIALIST AS WELL. OVER 30 MILLION CHILDREN OVER THE YEARS HAVE PARTICIPATED IN HEAD START PROGRAMS. FIFTH WAS A ROLE PLAYED BY DR. COOKE THAT IS OFTEN OVERLOOKED. HIS MEMBERSHIP ON THE NATIONAL COMMISSION FOR THE PROTECTION OF HUMAN SUBJECTS OF BIOMEDICAL AND BEHAVIORAL RESEARCH. IN THE MID 1970s, BIOMEDICAL RESEARCH WAS UNDER CHUCK HATAK FROM A NUMBER OF QUARTERS WITH CONCERNED FOCUS ON ADEQUACY OF INFORMED CONSENT FOR SPECIAL POPULATIONS INCLUDING CHILDREN, PREGNANT WOMEN, PRISONERS AND THE INSTITUTIONALIZED MENTALLY INFIRM. I WAS INVOLVED WITH DR. CHARLES LOWE OF NICHD IN SELECTING THE 11 MEMBERS OF THE COMMISSION APPOINTED BY THE SECRETARY OF HEW. AS PRESCRIBED IN THE LEGISLATION, SPONSORED INTERESTINGLY ENOUGH BY SENATOR TED KENNEDY. I PUSHED STRONGLY FOR INCLUSION OF DR. COOKE ON THE PANEL. HE HAD FORMERLY STUDIED BIOETHICS, HE ALSO HAD SCIENTIFIC EXPERTISE IN THE AREAS OF POE CUSS FOR THE COMMISSION. HE WAS SELECTED BY THE SECRETARY AND PROVED TO BE A VERY VALUABLE MEMBER. OF PARTICULAR NOTE, WHEN THE TIME CAME FOR THE COMMISSION ACTION ON THE FINAL REPORT ON RESEARCH INVOLVING CHILDREN, DR. COOKE PROPOSED ADDING RIGHT AT THE BEGINNING OF THE REPORT THE PHRASE "AND SHOULD BE ENCOURAGED" TO THE WORDS "RESEARCH INVOLVING CHILDREN MAY BE CONDUCTED," BY THE SECRETARY, SO THAT IT ACTUALLY READ" RESEARCH INVOLVING CHILDREN MAY BE CONDUCTED AND SHOULD BE ENCOURAGED BY THE SECRETARY." THIS LANGUAGE WHICH APPEARS NOWHERE ELSE IN THE DOCUMENTS FROM THE COMMISSION REFLECTED DR. COOKE'S PASSIONATE BELIEF IN THE POWER OF RESEARCH TO IMPROVE THE LIVES OF CHILDREN, AND THAT THERE SHOULD BE MORE RESEARCH, NOT LESS. THIS WAS DR. COOKE'S LAST MAJOR CONTRIBUTION IN THE PUBLIC POLICY ARENA. SOME PEOPLE'S LIVES ARE NOTED FOR MAKING DISCOVERIES THAT CHANGE HOW WE PREVENT OR TREATED DISEASE, AND WE HONOR THEM FOR THEIR CONTRIBUTIONS. ONE OF THE HONORS THAT CAME TO DR. COOKE WAS HIS PRESENTATION OF THE SURGEON GENERAL'S MEDALLION IN 1992, PRESENTED BY DR. ANTONIO NOVELLO, FORMERLY THE DEPUTY DIRECTOR OF NICHD. AND NOW FUNCTIONING IN THIS PICTURE AS THE SURGEON GENERAL OF THE UNITED STATES. DR. COOKE, IN CONTRAST WITH MANY OTHERS BUT ALONG WITH MANY OTHERS CHANGED NOT INDIVIDUALS BUT SOCIETY. BY AIIVETTING THE -- ALTERING THE PERCEPTION OF PEOPLE FROM THE MEDICAL PROFESSION AND THE PUBLIC TO PERSONS WITH DISABILITIES. HE CHANGED THE WAY WE LIVE AND TREAT EACH OTHER. THE GORKS ARE GONE INDEED. WE HAD NOR AND THANK HIM FOR MAKING THE WORLD A BETTER PLACE FOR ALL OF US. THANK YOU FOR GIVING ME THE TIME TO PRESENT. [APPLAUSE] >> THANK YOU VERY MUCH, DUANE. DUANE WILL BE STAYING AROUND BOTH FOR THE BREAK AND OTHER FESTIVITIES THAT ARE ALSO BITTERSWEET AFTER THE BREAK. OUR NEXT PRESENTATION, YOU'VE ALREADY HEARD A COUPLE OF ALLUSIONS TO, THAT'S ABOUT THE HUMAN PLACENTA PROJECT, AND THIS IS GOING TO BE SORT OF A TAG TEAM PRESENTATION BY CATHY SPONG AND MYSELF, BUT ALSO HAVING SEVERAL COUNCILMEMBERS WHO WERE IN ATTENDANCE AT THE MEETING ALSO CHIME IN WITH THEIR THOUGHTS, ET CETERA, BUT THEN ALSO CLEARLY OPENS UP AT THE END OF THE PRESENTATION FOR COUNCIL DISCUSSION ABOUT HOW WE'RE THINKING ABOUT THIS HUMAN PLACENTA PROJECT. SHOULD WE CONTINUE TO BE THINKING ABOUT IT AND IF SO, IN WHAT WAY KIND OF THING. SO I'LL TURN IT OVER TO KEA THOO TO LAUNCH INTO IT, AND THEN I WILL FOLLOW HER AND THEN WE'LL GET INTO THE DISCUSSION. >> THANKS. WE'RE GOING TO DO A TAG TEAM PRESENTATION OF THIS MEETING HOT OFF THE PRESS. IT WAS MAY 27TH AND 28TH, AND WITH A REALLY EXCITING AND INVIGORATING MEETING. JUST BEFORE THE EXCITEMENT OF THE BUILDING. BEFORE THE MEETING WAS HELD, WE HAD MANY THOUGHTS ABOUT LAUNCHING THIS TYPE OF A MEETING MEETING, HAD SPOA WE SPOKEN WITH YOU AND BRIEFED YOU WITH THE IDEA OF MOVING FORWARD THE HUMAN PLACENTA PROJECT. I JUST WANT TO CALL TO YOUR ATTENTION A CURRENT POSITION ENTITLED PLACENT PLACENTAL STRUCTURE, DEVELOPMENT AND FUNCTION IN REALTIME. THE MEETING ITSELF HAD ABOUT 70 PARTICIPANTS. WE WERE TRYING TO KEEP IT TO A MANAGEABLE LEVEL SO THAT WE WOULD REALLY BE ABLE TO GET A LOT OF DIALOGUE BETWEEN THE PARTICIPANTS, AND THE MEETING WAS STRUCTURED SO THAT WE HAD A COUPLE OF BACKGROUND PRESENTATIONS, BUT THEN PREDOMINANTLY BREAKOUT SESSIONS WHERE WE HAD GROUPS OF PEOPLE FOCUSED ON SPECIFIC QUESTIONS TO TRY TO IDENTIFY WHAT ARE THE CRITICAL TOPICS TO MOVE IT FORWARD. THE PARTICIPANTS CAME FROM INCREDIBLY DIVERSE BACKGROUNDS, AND I SAY THAT BECAUSE WHAT WE WERE INTERESTED IN WAS NOT ONLY THE PEOPLE WHO HAVE STUDIED PLACENTAS AND DEVOTED THEIR LIVES TO PLACENTAS, BUT THOSE PEOPLE WHO, AS WE LIKE TO SAY, MAY HAVE ONLY HAD ONE ATTACHMENT TO A PLACENTA IN THEIR LIFE. OR THEY MAY HAVE HAD SEVERAL ATTACHMENTS TO PLACENTAS IN THEIR LIFE BUT REALLY DIDN'T FOCUS ON THE PLACENTA. DEPENDING ON HOW MANY CHILDREN THEY HAD. AND WE WANTED PEOPLE WHO WERE AT THE TOP OF THEIR FIELD, BE IT IN A SOCIAL SCIENCE FIELD, IN ANOTHER MEDICAL FIELD, OR IN A TECHNOLOGY-TYPE FIELD, WHERE THEY COULD TAKE THE KNOWLEDGE THAT THEY HAD IN THEIR AREA AND SEE HOW COULD WE APPLY THAT IF AT ALL TO THE STUDY OF THE PLACENTA. SO WE HAD PEOPLE WHO ARE REALLY LIMITED KNOWLEDGE OF THE PLACENTA IN ATTENDANCE, AND THAT WAS THE REASON TO HAVE THREE KIND OF OVERARCHING BACKGROUND TALKS ON WHAT IS THE PLACENTA, WHY IS IT IMPORTANT, HOW DOES IT WORK, WHAT IS ITS STRUCTURE, THINGS LIKE THAT, TO PUT IT INTO CONTEXT FOR THE PEOPLE WHO HAD LIMITED KNOWLEDGE ABOUT THE PLACENTA. WE HAD NINE NIH ICs PRESENT AS WELL AS THE OFFICE OF RESEARCH ON WOMEN'S HEALTH AT THE MEETING. WE HAD SEVERAL OTHERS WHO WERE INTERESTED BUT DIDN'T HAVE THE ABILITY TO SEND SOMEONE TO THE MEETING. WE HAD REPRESENTATIVES FROM MANY PROFESSIONAL SOCIETIES AND ORGANIZATIONS WHO WERE VERY INTERESTED IN THIS PROJECT. IN ADDITION, WE HAD JOURNALISTS. WE HAD SCIENCE PEOPLE WHO WRITE ABOUT OUR SCIENCE WHO WE INTERACT WITH A LOT ALSO PRESENT. THEY'VE BEEN VERY INTERESTED IN THE STUDY OF THE PLACENTA AND IN DIFFERENT DISCUSSIONS WERE INTERESTED IN PARTICIPATING IN BEING AT THE MEETING AS WELL. SO AT THE END OF MEETING, WE CAME UP WITH A NUMBER OF QUESTIONS, ONE WAS ACTUALLY A QUESTION BEFORE THE MEETING, BUT THEN OF COURSE WAS ALSO AN IMPORTANT QUESTION AT THE END OF THE MEETING, WHICH WAS A QUESTION TO THE GROUP, IS THE HUMAN PLACENTA PLOJ WORT PROJECT WORTH DOING. WHEN THIS TYPE OF PRESENTATION WAS GIVEN AT THE END OF THE MEETING, ALAN WAS GIVING THIS SLIDE AND HIS ANSWER WAS YES, SO I THINK THAT THAT'S A GOOD VALIDATION, THAT MOVING FORWARD WITH THE HUMAN PLACENTA PROJECT IS ONE THAT WE DO WANT TO EMBARK UPON. THE SECOND QUESTION THEN REALLY WAS THE STRUCTURE OF THE ENTIRE MEETING, WHICH IS WHAT SHOULD THE HUMAN PLACENTA PROJECT ACCOMPLISH. WE HAD A NUMBER OF AREAS THAT WE WERE VERY INTERESTED IN THINKING ABOUT, AREAS THAT WE DISCUSSED AT THAT MEETING. SOME WERE SCIENTIFIC ADVANCES AND I'M GOING TO TALK BRIEFLY THROUGH SEVERAL OF THOSE, IN ADDITION, THE HUMAN PLACENTA PROJECT WILL LIKELY WANT TO AND NEED TO ACCOMPLISH THINGS ON RESEARCH SHARED RESOURCES, SUCH AS DATABASES, REPOSITORIES, TOOLS, AS WELL AS MEETINGS WHERE PEOPLE COULD GET TOGETHER AND IDENTIFY AREAS AND WAYS TO MOVE THIS FIELD FORWARD USING TECHNOLOGIES AND ADVANCES FROM OTHER FIELDS. WE DO ENVISION THAT THE HUMAN PLACENTA PROJECT WILL RESULT IN TECHNOLOGY APPLICATION AND TECHNOLOGY DEVELOPMENT. WE WILL HAVE THE ABILITY TO APPLY TECH LOGIC ADVANCES THAT ARE ALREADY BEING USED IN OTHER FIELDS, AND USE THOSE RESOURCES AND THOSE ADVANCES TO OUR BENEFIT AND UNDERSTANDING IN STUDYING THE PLACENTA. IN ADDITION, WE'RE GOING TO NEED TO DEVELOP NEW TOOLS TO BE ABLE TO UNDERSTAND THE STRUCTURE AND THE FUNCTION OF THE PLACENTA IN REALTIME. AND I THINK ONE OF THE UNIQUE THINGS THAT MAY NOT BE FULLY APPRECIATED IS THAT BY DEVELOPING THESE NEW TECHNOLOGIES, NOT ONLY IS IT GOING TO HELP US WITH THE PLACENTA, BUT IT LIKELY WILL HELP OTHER FIELDS AS WELL BECAUSE THESE ADVANCES, IF WE CAN UNDERSTAND THE PLACENTA COULD BE USED FOR OTHER ORGANS AND OTHER AREAS. SO THE MEETING ITSELF DRAFTED SOME INITIAL CONCEPTS TO ADDRESS OUR OVERARCHING GOAL, WHICH WAS UNDERSTANDING THE HUMAN PLACENTA STRUCTURE AND FUNCTION IN REALTIME. I THINK IT WAS IMPORTANT FOR US TO KIND OF PUT THE PARAMETERS AROUND IT BECAUSE THERE IS SO MUCH THAT NEEDS TO BE DONE IN UNDERSTANDING THE PLACENTA. SOME OF THAT IS GOING TO BE OUTSIDE OF THE HUMAN PLACENTA PROJECT, BUT SOME OF IT IS GOING TO BE WITHIN THE HUMAN PLACENTA PROJECT ITSELF AND SO I JUST WANTED TO GIVE A BRIEF OVERVIEW OF SOME OF THE SCIENCE OF WHAT WE TALKED ABOUT, AND SOME OF THE AREAS THAT WILL BE DEVELOPED AND MOVED FORWARD. SO AS I MENTIONED, WE'RE INTERESTED IN BOTH THE ANATOMY AND THE FUNCTION OF HUMAN PLACENTA IN REALTIME. AND THAT ANATOMY BOTH INCLUDES THE SPECIMEN ITSELF, THE TISSUE ITSELF, BUT ALSO THE MOLECULAR ARCHITECTURE, AND IDEALLY GETTING AT BOTH OF THOSE IN REALTIME, SO NOT DISTURBING THE PLACENTA, NOT TAKING IT OUT, BEING ABLE TO UNDERSTAND HOW THAT ANATOMY DEVELOPS AND CHANGES ACROSS TIME, SO THE GOAL IS TO CHARACTERIZE THAT DEVELOPMENT AND THE DEVELOP MENTAL DYNAMIC, AND OF COURSE THE CHALLENGE IN PREGNANCY IS THAT THE PLACENTA, JUST LIKE THE BABY, IS CONSTANTLY CHANGING. SO THIS ISN'T SOMETHING THAT YOU'RE GOING TO BE ABLE TO DO ONCE, SAY AT 13 WEEKS OR 15 WEEKS, AND YOU'RE DONE, BECAUSE THE PLACENTA AT 13 WEEKS AND 15 WEEKS IS VERY DIFFERENT THAN THE PLACENTA AT 24 WEEKS, WHICH OF COURSE IS DIFFERENT IN 34 WEEKS AND DIFFERENT AT 40 WEEKS. ONCE WE CAN CHARACTERIZE NORMAL AN TO OH MIC DEVELOPMENT, WE NEED TO UNDERSTAND WHEN THAT NORMAL PROCESS GOES AWRY. AND THEN POTENTIALLY LONGER TERM GOALS OR HOW CAN WE INTERVENE, HOW CAN WE CHANGE THAT, AND BRING THE PROCESS BACK TO THE NORMAL. SO HOW DO WE DO THIS? THERE'S TWO DIFFERENT ASPECTS WE'RE WORKING ON, TECHNOLOGICAL ADVANCES AS WELL AS NON-TECH ADVANCES. COULD WE DEVELOP TOOLS TO ALLOW US TO ASSESS MIK MICROSCOPICALLY THE PLACENTA IN REREALTIME, THE DEVELOPMENT IN VIVO. UUSUSING KNOWN TOOLS, USING MRI TECHNOLOGIES THAT ARE CURRENTLY USED TO STUDY THE LIVER, FOR EXAMPLE, AS WAS SAID, YOU CAN CHARACTERIZE THE LIVER AND IDENTIFY WHEN IT'S A FIBROTIC LIVER VERSUS A S CIRRHOTIC LIVER. IF YOU CAN DO THAT FOR THE LIVER USING MRI TECHNOLOGIES RIGHT NOW, HOW CAN WE USE THOSE TOOLS AND ASSESS THE PLACENTA AS WELL? SO WE'LL USE KNOWN TOOLS BUT WE'RE GOING TO HAVE TO DEVELOP NEW TOOLS BECAUSE CLEARLY WHAT'S OUT THERE ISN'T GOING TO GET US COMPLETELY TO THE POINT THAT WE WANT. WE NEED TO IMPLEMENT KNOWN ADJUNCTS FOR STUDYING THE PLA 16 16 IT TA SWELS DEVELOPING NEW ONES. THEN NON-TECHNOLOGICAL STU CA STUDIES INCLUDE CHARACTERIZING SUBSTANCES IN THE MATERNAL MEDIA, BEING IT MATERNAL BLOOD, MA TEERNMATERNAL SERUM, CERVICAL VAGINAL SECRETIONS, HOW DO THOSE HELP US UNDERSTAND THE PLACENTA? WHAT CAN WE FIND CIRCULATING IN MATERNAL SECRETIONS THAT WILL HELP US UNDERSTAND HOW THE PLACENTA IS FUNCTIONING AND STRUCTURED. AND THEN DEVELOPING AND IDENTIFYING NEW MARKERS. SIMILAR LE, WE CAME UP WITH -- AND THAT'S JUST A VERY SMALL SNAPSHOT THE THINGS THAT CAME UP WITH AT THE MEETING ON THE ANATOMY. AGAIN WE CAME UP WITH A SIMILAR TYPE FOR THE FUNCTION OF THE PLACENTA INCLUDING METABOLISM, IMMUNOLOGY OF THE PLACENTA, ENDOCRINE AND TRANSPORT, AND AGAIN, INFORMATION THAT WE GET IN UNDERSTANDING THE PLACENTA, WE'RE GOING TO BE ABLE TO USE REALLY IN OTHER FIELDS AS WELL. UNDERSTANDING THE IMMUNOLOGY OF THE PLACENTA, HOW THE MATERNAL FETAL UNIT FUNCTIONS REALLY WILL HELP ADVANCE OUR UNDERSTANDING OF IMMEU NOLG ITSELF. SO AGAIN USING TECHNOLOGY, USING OUR KNOWN METHODS TO ASSESS TISSUE OXYGENATION AND LACTATE IN VIVO, AND THEN DEVELOPING OTHER ASSAYS TO ASSESS THE METABOLIC STATE OF THE PLACENTA. AS WAS SAID VERY CLEARLY AND IS A REALLY LOVELY THOUGHT, USING THE SCIENCE THAT WE WANT TO DRIVE THE TECHNOLOGY. MANY OF THE PEOPLE AT THE MEETING WERE -- HAD HELPED TO DEVELOP MANY OF THE TECHNOLOGIES BOTH IN ULTRASOUND AND IN MRI, AND SAID WHEN THEY WORKED WITH COMPANIES AND PEOPLE, THEY SAID THIS IS WHAT WE WANT TO BE ABLE TO ASSESS, THIS IS THE ISSUE WE NEED TO DO AND THE COMPANIES WORKED WITH THEM. SO USING THAT TYPE OF AN APPROACH OF WHAT IS THE SCIENCE TO DRIVE THE TECHNOLOGY, DEVELOPING NEW MODELS AND DEVELOPING AND USING ADJUNCT SUCH AS NANOPARTICLES NEEDING TO OF COURSE IDENTIFY SAFETY PROTOCOLS FIRST, BUT THEN HOW CAN WE USE THOSE TO ASSESS THE PLACENTA? SIMILARLY AGAIN, WITHOUT TECHNOLOGY, WITHOUT THESE IMAGE-DRIVEN THINGS, THERE'S A LOT WE CAN DO INCLUDING NONINVASIVE MARKERS AND FETAL PARTICLES IN MATERNAL CIRCULATION. NOW I'M GOING TO HAND OVER TO ALAN TO CONTINUE THE PRESENTATION. >> AS CATHY TOLD YOU, THERE WERE NINE OTHER ICs AND THE OFFICE OF RESEARCH ON WOMEN'S HEALTH HAVE ATTENDED. THEY CLEARLY DO HAVE INTEREST IN THIS. IT'S IMPORTANT OBVIOUSLY AS WE TALK ABOUT OTHER ICs AND OTHER NON-NIH ENTITIES, THE MARCH OF DIMES AND SENIOR LEADERSHIP TO BE THERE, SOME OTHER ORGANIZATIONS THAT ALSO HAVE INTERESTS, OUR WANTING TO INVOLVE THEM IS BOTH FOR THE INTELLECTUAL PERSPECTIVE THAT THEY BRING TO BEAR ON THIS, WHICH CLEARLY ARE VERY USEFUL TO THIS AS WE ALL KNOW THE PLACENTA IN TERMS OF STRUCTURE AND PARTICULARLY ITS FUNCTION HAS IMPORTANT LESSONS FOR US ABOUT IMMUNOLOGY THAT NIAID IS NOT ONLY INTERESTED IN BUT HAS PARTICULAR EXPERTISE BOTH IN TERMS OF STAFF AND THEIR RESEARCH COMMUNITY. IN TERMS OF WHAT IT SAYS ABOUT CARDIOVASCULAR OR AT LEAST VASCULAR FUNCTION, NHLBI HAS INTEREST, ET CETERA. SO WE'RE HOPING AS WE MOVE FORWARD TO INVOLVE THEM FOR THEIR INTELLECTUAL CONTRIBUTIONS AND WE WOULD NOT BE ABOVE THEIR WILLING TO MAKE FINANCIAL CONTRIBUTIONS TO THIS AS WELL. WE HAVEN'T DONE THE FORMAL TIN CUPPING YET, BECAUSE WE REALLY WANT TO HAVE THIS CRYSTALLIZE A LITTLE BIT MORE TO SEE WHAT SHOULD REALLY BE BEFORE WE CAN FIGURE OUT WHAT PART OF IT MIGHT BE OF MOST INTEREST TO THIS OTHER FUNDER, ET CETERA, BUT I CAN TELL YOU AT VARIOUS -- MANY LEVELS OF THESE OTHER ORGANIZATIONS, THERE REALLY IS INTEREST IN THIS. I THINK MANY RECOGNIZE THIS IS A REAL SCIENTIFIC OPPORTUNITY. SO CATHY TALKED ABOUT THE FIRST COUPLE OF QUESTIONS. A THIRD QUESTION WHICH EMERGED WAS WHAT SORT OF PRINCIPLES IF THESE ARE THE CONTENT AREAS AND THE IDEAS WHERE WE WANT TO GO, HOW DO WE EXPLORE THEM, WHAT ARE THE KIND OF PRINCIPLES THAT SHOULD GUIDE THE HUMAN PLACENTA PROJECT IN ACHIEVING THAT KIND OF UNDERSTANDING. SO WE DEVELOPED A BUNCH OF DRAFT PRINCIPLES WHICH STILL ARE VERY MUCH DRAFT. AT THIS MEETING THEY SEEM TO BE SUPPORTIVE OF THOSE BUT WE'RE INTERESTED IN YOUR INPUT ABOUT THESE PRINCIPLES ABOUT HOW WE DO THE SCIENCE AS WELL AS WHAT IS THE SCIENCE WE SHOULD DO. SO ONE OF THEM IS WE DO SEE OURSELVES AS THE NATURAL LEAD FOR THIS, SIMPLY THE PLACENTA AS AN ORGAN IS ONE THAT I THINK PRETTY CLEARLY BELONGS TO NICHD. BECAUSE OF DUANE'S HISTORY LESSON EARLIER, BECAUSE OF OUR FOUNDATION AROUND CHILD HEALTH, MATERNAL HEALTH, FETAL HEALTH AND WELL-BEING, IT MAKES SENSE THAT THE PLACENTA IS OF PARTICULAR INTEREST TO US AND AGAIN WE CLEARLY HAVE SUPPORT OF PLACENTAL SCIENCE FOR DECADES, SO WE SEE OURSELVES BEING THE NATURAL LEAD FOR THIS, BUT CLEARLY A COLLABORATIVE PROCESS INVOLVING OTHER FUNDERS, OTHER PARTS OF NIH, ET CETERA, AND VERY MUCH A TRANSDISCIPLINARY EFFORT, NOT JUST BECAUSE THAT'S THE WAY RESEARCH GOES FORWARD THESE DAYS, BUT BECAUSE OF THE NATURE OF PLACENTAL STRUCTURE AND FUNCTION, IT JUST LENDS ITSELF, DEMANDS A TRANSDISCIPLINARY APPROACH THE WE THOUGHT THIS IS REALLY -- WE TALKED ABOUT THIS ULTIMATE GOAL OF BEING ABLE TO MONITOR PLACENTAL STRUCTURE AND FUNCTION IN THE HUMAN REALTIME, AND THAT'S WONDERFUL BUT WE THINK THAT IT REALLY NEEDS TO HAVE INTERMEDIATE DELIVERABLES, METRICS, TO SEE HOW WE'RE DOING, WITH A CLEAR ABILITY TO REDIRECT SCIENTIFIC FOCI AND FUNDING DEPENDING UPON HOW WE'RE DOING IN TERMS OF ACHIEVING THOSE INTERMEDIATE GOALS. SO THIS MAY BE A LITTLE BIT IN SOME WAY SOME TOP DOWNISH KIND OF THING THAT WE NEED TO REALLY SEE IF WE ARE COMING UP WITH METRICS AND WHAT WE EXPECT TO HAVE HAPPEN TO BE ABLE TO SAY, WELL, WE'VE TRIED THIS APPROACH LONG ENOUGH TO KNOW IT'S NOT WORKING. AND TO SAY WE'RE GOING TO STOP DOING THAT AND NOT JUST KEEP FOLLOWING IT FRUITLESSLY FOREVER, BUT REDIRECT OUR RESOURCES WHICH CAN BE BOTH STAFF RESOURCES BUT ALSO MONEY TO PURSUE SOME OTHER ASPECT THAT IT'S TURNED OUT TO BE MORE PROFITABLE OR LOOKS LIKE AS YOU CAN IMAGINE DIFFERENT IMAGING TECHNIQUES WE MIGHT WANT TO EXPLORE, AND WE PROBABLY WANT TO EXPLORE A NUMBER, SOME OF WHICH WILL FAIL, BUT THEN FOCUS MORE ON THOSE THAT SEEM AS THOUGH THEY'RE SUCCEEDING. THAT FROM THE GET-GO, THIS SHOULD BE THOUGHT ABOUT AS AN OPEN ACCESS KIND OF PROJECT, THAT THE TOOLS WHICH ARE DEVELOPED, THE DATA WHICH ARE GENERATED, THEY SHOULD BE WIDELY AVAILABLE AND QUICKLY AVAILABLE TO THE ENTIRE RESEARCH COMMUNITY, INCLUDING FOLKS WHO HAVE HAD NO PRIOR INVOLVEMENT IN THE HUMAN PLACENTA PROJECT, BUT TO MAKE THOSE TOOLS AVAILABLE TO THEM SO MAYBE THEY CAN APPLY THEM TO SOME OTHER AREA OF BIOMEDICAL RESEARCH OR THAT THEY CAN GET SO INTRIGUED BY THEM THAT THEY WANT TO THEN COME JOIN THE HUTHE HUMAN PLACENTA PROJECT. THAT THERE OUGHT TO BE A TRAINING ASPECT TO THIS WHICH BY ITS DEFINITION AGAIN OUGHT TO BE TRANSDISCIPLINARY. YOU CAN IMAGINE THIS IS A PARTICULARLY GOOD OPPORTUNITY TO ACHIEVE TRANSDISCIPLINARY TRAINING. THAT TRAINING OF FOLKS TO GO INTO PLACENTAL BIOLOGY, ET CETERA, SHOULD BE A PART OF THIS EFFORT. THIS IS A PICTURE OF A SUNSET. IT SHOULDN'T BE CONSTRUED TO GO ON FOREVER. IT NEEDS TO HAVE A BEGINNING AND AN END. WE NEED TO THINK ABOUT HOW LONG IT'S GOING TO TAKE AND ONCE WE FIGURE THAT OUT, WE NEED TO SAY IT'S GOING OH END. IT'S NOT TO THINK THAT AFTER THIS, WE WILL HAVE ANSWERED ALL QUESTIONS ABOUT PLACENTAL BIOLOGY FOR THE ENDS OF TIME, BUT THAT THE PROJECT WILL HAVE ACHIEVED ITS GOALS AND THAT PEOPLE USING, WE HOPE, THE TOOLS, THE TECHNIQUES, THE KNOWLEDGE THAT EMANATES FROM THE PROJECT WILL CONTINUE TO DO ALL KINDS OF BIOMEDICAL RESEARCH, BUT THE PROJECT ITSELF OUGHT TO HAVE A FINITE LIFE. IN TERMS OF NEXT STEPS, WE NEED TO FURTHER REFINE THE KIND OF ROAD MAP OF WHAT WE WANT TO DO AND HOW WE'RE GOING OH GE GOING TO GET THERE, THAT LEADERSHIP FROM NICHD AND SEVERAL CURRENT AND FORMER ADVISORY COUNCIL MEMBERS AS YOU'LL SEE DEPICTED IN A MOMENT WILL BE WORKING TOGETHER TO DEVELOP A SCIENTIFIC PLAN FOR THE PROJECT THAT WE WOULD THEN SUBMIT TO A MAJOR JOURNAL, WE WOULD HOPE FOR PUBLICATION. THAT WE CLEARLY WILL COLLABORATE WITH OTHER PARTNERS TO DEVELOP THIS FURTHER, INCLUDING IN TERMS OF FUNDING. THAT OUR STAFF WILL WORK TOGETHER WITH YOU, WITH COUNCIL, TO HELP US REALLY DEVELOP FUNDING OPPORTUNITIES BASED ON THE SCIENCE, WHERE DO WE THINK THAT WE SHOULD REALLY SORT OF PLANT A STAKE AND KAY THIS ARE THE THINGS WE OUGHT TO DO AND WHAT ORDER SHOULD WE BE DOING THEM KIND OF THING. AND WE ALSO DO PLAN A SECOND HUMAN PLACENTA PROJECT MEETING FOR SOMETIME NEXT YEAR, PROBABLY SOMEWHAT LARGER, WE WOULD GUESS, THAN THIS YEAR'S MEETING BUT THAT'S STILL TO BE DETERMINED, TO BRING PEOPLE TOGETHER TO LET THEM KNOW BETTER ABOUT WHERE WE'RE HEADED BUT PARTICULARLY TO GET INPUT INTO WHERE WE'RE HEADED. SOME FINAL THOUGHTS ABOUT THIS WHOLE THING, IT'S NOT GOING TO BE EASY. I MEAN, THERE'S SOME REAL OPPORTUNITY HERE, BUT IT'S NOT GOING TO BE EASY. IF IT WAS GOING TO BE EASY, THEN THERE WOULD BE NO REASON TO DO IT, SOMEBODY WOULD HAVE ALREADY DONE IT KIND OF THING. WE CLEARLY SEE THIS AS AN ITERATIVE PROCESS THAT WE STARTED IT, WE'LL GET A LITTLE BIT DOWN THE WAYS BUT WE'RE STILL PRETTY EARLY IN TERMS OF FIGURING THIS OUT. IT NEEDS TO BE CONSTANTLY AN ITERATIVE PROCESS, THAT WE LOOK AT WHAT WE'RE DOING AND IMPROVE IT ALL THE WAY ALONG. CLEARLY NICHD IS COMMITTED TO DOING THIS, BUT AGAIN WE SEE IT AS A COLLABORATIVE EFFORT INVOLVING MANY OTHER PARTNERS IN THIS, THAT THE SCIENTIFIC COMMUNITY NEEDS TO HAVE CONTINUED INPUT INTO THIS. THIS NEEDS TO BE OPEN TO LOTS OF QUESTIONING, POKING AROUND, PRODDING, ET CETERA, ET CETERA, FROM THE ENTIRE COMMUNITY. WE DO ANTICIPATE FUNDING ANNOUNCEMENTS THAT FOCUS ON SPECIFIC OPPORTUNITIES. HOWEVER, PEOPLE ASK IS THIS ONLY GOING TO BE A TOP DOWN PROJECT. WE SEE IT AS BOTH TOP DOWN, BOTTOM UP, WHATEVER, THAT WITHIN THE HUMAN PLACENTA PROJECT, WHILE THERE OUGHT TO BE CERTAIN FOCUSED OPPORTUNITIES, WE ALSO WOULD INVITE, AND IT'S PART OF WHAT WE'VE DONE IN SAYING, FOR INSTANCE, THAT WE'RE GOING TO LOOK PARTICULARLY IN TERMS OF HIGH PROGRAM PRIORITY AT SUBMISSIONS FOR GRANTS THAT HAVE PLACENTA THAT MAY NOT HAVE BEEN TO THE PROJECT ITSELF BUT WE NEED TO LEAVE ROOM VERY MUCH FOR INVESTIGATOR INITIATED KIND OF APPLICATIONS. IT REALLY DOES HAVE WIDE INTEREST, CATHY SHOWED YOU, MENTIONED THE REPORTERS WHO CAME TO THE MEETING. THOSE WERE THE ONLY ONES WE HAPPENED TO INVITE. EVERY MAJOR MEDIA THING THAT WE INVITE SAID OH, THAT'S REALLY INTERESTING, WE'D LIKE TO COME COVER THAT. SO SCIENCE WAS THERE, NATURE WAS THERE, "THE NEW YORK TIMES." I CAN TELL YOU WITH TALKING WITH ANNISE GRADY FROM "THE NEW YORK TIMES," SHE WAS ONLY TOLD ABOUT THE MEDIA I THINK THREE DAYS BEFORE IT HAPPENED AND COMPLETELY REDIRECTED HER SCHEDULE SO SHE COULD BE THERE, AND SHE MUQTADA AL-SAD SHE SAID SHE COULDN 'T DECIDE WHETHER THE STORY OR STORIES ABOUT IT BUT SHE THOUGHT IT WAS CH OF SUCH IMPORTANCE THAT SHE WANTED TO DO THAT. SCIENCE IN CDER, THERE'S THIS STORY THAT CAME OUT EARLIER THIS WEEK AND HAS BEEN UPDATED SINCE IT ORIGINALLY OCCURRED. JOS LIN KAISER WHO COVERS THE NIH FOR SCIENCE WAS THERE. SO IT'S NICE TO KNOW THAT IT DOES HAVE, I THINK, SOME WIDE INTELLECTUAL APPEAL. I WANT TO PARTICULARLY THANK THREE CURRENT AND ONE FORMER MEMBER OF COUNCIL FOR THE GUIDANCE THEY GAVE GOING INTO THIS MEETING AND ALSO FOR THE GUIDANCE ALONG WITH THE REST OF COUNCIL, BUT BECAUSE OF THEIR PARTICULAR INTERESTS, WE ARE LEANING ON THEM, PARTICULARLY THEY ARE THE ONES WHO ARE GOING TO, ALONG WITH SOME STAFF LEADERSHIP, HELP CO-AUTHOR THIS PAPER, ET CETERA. BUT WE REALLY ARE LOOKING TO ALL OF YOU FOR GUIDANCE AND HOW WE DO THIS. I MIGHT ASK KIM AND GEORGE, SINCE THEY NOT ONLY ARE HERE BUT WERE AT THE MEETING, IF YOU HAVE ANY OTHER REFLECTIONS ABOUT THE MEETING OR THE PROJECT ITSELF THAT YOU MIGHT WANT TO OFFER TO SORT OF START OFF THE COUNCIL DISCUSSION OF THIS. >> OF COURSE EVERYBODY KNOWS I'M AN OBSTETRICIAN SO I'M TERRIBLY EXCITED ABOUT THIS. EVEN IF I HADN'T GONE TO THE MEETING. BUT AT THE MEETING, I STARTED TO ENVISION WHAT WE MIGHT BE ABLE TO ACCOMPLISH, AND WE WERE TOLD TO THINK ABOUT IN REALTIME, MEANING IT'S NOT JUST WAITING UNTIL THE PLACENTA DELIVERS AND THEN DOING ALL OUR WONDERFUL STUDIES ISSMENTS HO, IT'S HOW CAN WE STUDY THE BABY AND THE PLACENTA AS A UNIT WHILE THE PREGNANCY IS PROGRESSING. IT'S INCREDIBLY CHALLENGING, BUT FOR THE OBSTETRICIAN SO VERY NECESSARY AND EXCITING. BECAUSE WE AS OBSTETRICIANS ARE CHARGED WITH TAKING CARE OF THE MOTHER AND THE BABY, AND ASSURING THAT EVERYTHING IS GOING WELL. NOT ONLY DIAGNOSING A DISEASE, BUT GETTING ASSURANCE THAT THERE IS NO HYPOXIA, THERE IS NO SIGNIFICANT PROBLEM. THAT IS VERY HARD TO DO TO RULE OUT PATHOLOGY. SO I HAD THIS VISION THAT, OKAY, MRI IS THOUGHT TO BE QUITE SAFE IN PREGNANCY, IN FACT, WE'RE USING IT QUITE A BIT. AND WE CAN USE MRI TO LOOK AT LACTATE LEVELS IN ORGANS LIKE THE LIVER, AND OXYGEN LEVELS, AND WHAT IF INSTEAD OF WORRYING ABOUT HYPOXIA, I COULD JUST PUT A LITTLE MRI AND SAY THE PO2 IS X, THE LACTATE LEVEL IS Y, AND I KNOW, YES OR NO. SO I WAS THRILLED. AND THE OTHER THING I LOVE IS THIS IDEA OF A LIQUID BIOPSY. EVEN DURING THE PREGNANCY, THE PLACENTA SHOWERS THE MOTHER AND THE FETUS WITH EX-OWE SOMES, AND IN THE EX-SOMES ARE MICRO RNAs AND PROTEINS, AND IT'S AN AMAZING TIME IN LIFE, AND YOU CAN ACCESS THOSE EXOSOMSE AND YOU CAN ISOLATE THE RNA AND PROTEIN FROM THEM, SO I THINK THIS ALSO IS A REALTIME ANALYSIS, I'M VERY EXCITED ABOUT IT. THERE IS NO OTHER TIME IN LIFE OR IN BIOLOGY WHEN A HOST IS SHOWERED WITH THIS SORT OF SECOND MESSENGER THINGS AND TO UNDERSTAND IT IS INCREDIBLY EXCITING, SO I'M JUST GOING TO TELL YOU HOW GREAT IT WAS, AND THINK WE HAVE A GREAT DEAL OF OPPORTUNITY, AND I THANK YOU, ALAN AND CATHY, FOR TAKING ON THIS BRAVE NEW WORLD OF THE PLACENTA. >> GEORGE. >> I ALSO WANT TO THANK YOU AND CATHY, AND I KNOW YVONNE WAS AN EARLY SUPPORTER OF THAT TOO AND CAROLINE SENIOR WAS INSTRUMENTAL, SO YOU ALL ARE LEADING SOMETHING THAT IT'S MAYBE A CLICHE BUT IN MY MIND IS EXOWRN A MILESTONE IN OBSTETRICS. JUST THE FACT THAT NICHD TOOK ON THIS PROJECT AND PUT THIS MEETING IS ALREADY A MILESTONE. I MEAN, PEOPLE SAY IT'S THE FIRST SHOT, BUT IT'S MORE OF A BIG BANG THAN A FIRST SHOT IN MY OPINION. BECAUSE IT'S AMAZING IN THIS DAY AND AGE OF THE DIGITAL REVOLUTION AND SPACE EXPLORATION, THE PLACENTA IS STILL A BLACK BOX. WE REALLY DON'T KNOW MUCH ABOUT THE PLACENTA. WE ASSUME IT DOES THIS OR THAT BUT WE REALLY DON'T HAVE ANY PROOF THAT IT DOES IT, EVEN THE INNOVATION THAT WE SAY WE TALK ABOUT ALL THIS PLACENTA TROA FOE BLAST INVADING THE SPINAL ARTERIOLES. THAT'S JUST -- RIGHT NOW IT'S JUST IMAGINATION. WE DON'T REALLY -- WE CAN'T SEE IT. IN ALL OBSTETRICAL COMPLICATIONS, I CAN ASSURE YOU, I SHOW YOU EVIDENCE, THAT THEY'RE RELATED TO THE PLACENTA. EVERY OBSTETRIC COMPLICATION IS RELATED TO THE PLACENTA. AND I WANT TO GO FURTHER EVEN NOT ONLY OBSTETRICS, BUT OTHER INSTITUTES, OTHER FIELDS HAVE TO LOOK AT THE PLACENTA BECAUSE WE KNOW ITS RELATIONSHIP TO LONG TERM HEALTH OF THE BABY, THE DEVELOPMENTAL PROGRAMMING, ALL OF THAT STARTS IN THE PLACENTA, AND THEN AGAIN ON THE MATERNAL SIDE, CARDIOVASCULAR FUNCTIONS LATER, METABOLIC SYNDROME IN THESE WOMEN 10, 15 MINUTES LATER ARE RELATED TO THE PLACENTAL PATHOLOGY. SO IF WE UNDERSTAND IT, WE'RE GOING TO MAKE ALL THESE BIG IMPROVEMENTS IN HEALTHCARE. I LIKE THE PARALLEL BETWEEN HUMAN PLACENTAL PROJECT AND HUMAN GENOME PROJECT. AND I HAVE NO DOUBT THAT THE IMPACT WILL BE AS BIG IF NOT BIGGER THAN THE HUMAN GENOME PROJECT. I JUST HOPE THAT THE PARALLEL EXTENDS TO THE SUPPORT ALSO. [LAUGHTER] THE SUPPORT WE US A TALK ABOUT NICHD SUPPORT, BUT REALLY IN THIS AREA, WE HAVE TO LOOK AT OURSELVES, AT OUR INSTITUTIONS, AT OUR COLLEAGUES, AT OUR OTHER STAKEHOLDERS TO ALSO COME TO THE PLATE AND PROVIDE THE SUPPORT. I MEAN, WE HAVE TO BE THE AMBASSADORS TO THIS PROJECT, TO THE OUTSIDE COMMUNITY. SO I REALLY THANK YOU VERY MUCH FOR TAKING THIS ON. >> THANK YOU, GEORGE. OTHER INPUT, DISCUSSION, QUESTIONS, THOUGHTS FROM COUNCIL? DID WE ANSWER THE FIRST QUESTION CORRECTLY, THAT IS, IS THIS WORTH DOING IN YOUR EYES? NOT THAT WE'RE SAYING EXACTLY HOW MUCH WE'RE GOING TO OH DO IT YET. WE'LL COME BACK TO YOU WITH THOSE QUESTIONS, BUT I TAKE IT, UNLESS PEOPLE OBJECT, THAT YOU THINK THIS IS THE RIGHT THING FOR NICHD TO GO FORWARD WITH? OKAY. WELL, YOU WILL BE HEARING MORE AND WE'LL BE ASKING FOR YOUR INPUT IN VARIOUS WAYS CLEARLY AS WE GO FORWARD WITH ANY PARTICULAR FUNDING ANNOUNCEMENTS OR OTHER THINGS. BUT IN A GENERAL SENSE, THIS IS SOMETHING WE'LL BRING BACK TO YOU PERIODICALLY FOR YOUR INPUT AS A GROUP, BUT ALSO DON'T BE SURPRISED IF WE REACH OUT TO YOU INFORMALLY AS INDIVIDUALS. AGAIN, I THINK PART OF THIS, THERE ARE SOME PEOPLE WHO CLEARLY HAVE A BACKGROUND SORT OF PLACENTAL BIOLOGY BUT AS CATHY PARTICULARLY STRESSED IN HER PRESENTATION, WE'RE TRYING TO THINK ABOUT THIS MORE BROADLY IN SOME WAYS AND BRING IN OTHER PERSPECTIVES OF FOLKS WHO HAVE NOT SPENT THEIR LIVES THINKING ABOUT THE PLACENTA. SO SOME OF YOU WHO HAVE VERY DIFFERENT BACKGROUNDS AND EXPERTISE, WE'LL ALSO BE ASKING FOR YOUR HELP IN TERMS OF OUR THINKING THAT OUT A LITTLE FURTHER, IN TERMS OF YOUR IDENTIFICATION OF FOLKS FROM YOUR RESEARCH COMMUNITIES THAT WE SHOULD BE REACHING OUT TO IN ONE WAY OR THE OTHER. AND ALSO BEING AMBASSADORS ABOUT THIS, LETTING PEOPLE KNOW ABOUT WHAT WE'RE UP TO AND THE IDEA THAT MORE PEOPLE ARE THINKING ABOUT IT, WE'LL DO A BETTER JOB WITH IT. SO I THANK YOU ALL. NEXT, ONCE I'VE FOUND MY GLASSES, WE'LL MOVE ON TO -- I'LL TRY IT WITHOUT. WHAT THE HECK. PROBABLY A MISTAKE. ALL RIGHT. WELL, HERE WE GO. IT IS MY PLEASURE TO INTRODUCE DR. COAL GALLOWAY. AT LEAST I'M GOTTEN HIS NAME CORRECTLY. HE IS THE DIRECTOR OF THE INFANT BEHAVIOR LAB AND PROFESSOR OF PHYSICAL THERAPY AT THE UNIVERSITY OF DELAWARE. HIS RESEARCH FOCUSES ON HOW NEURAL BIOMECHANICAL AND BEHAVIORAL FACTORS IN COMBINATION WITH SOCIAL AND PHYSICAL ENVIRONMENTAL FACTORS CONTRIBUTE TO THE EMERGENCE OF EXPLORATORY BEHAVIORS IN YOUNG CHILDREN. CURRENT PROJECTS INCLUDE A FOCUS ON ADVANCING THE TECHNOLOGY AND TRAINING TO ASSIST CHILDREN IN MAXIMIZING THEIR DAILY EXPLORATION, SPECIFICALLY COMBINING LOW TECH AND HIGH-TECH INTO GO-TECH. HIS LAB ENJOYS FUNDING FROM THE NIH, FROM THE NATIONAL SCIENCE FOUNDATION, INDUSTRY, AND FROM THE FOUNDATION FOR PHYSICAL THERAPY. HE ALSO HAS DEEP CLINICAL INTERESTS WHICH INCLUDE THE REHABILITATION OF ADULTS FOLLOWING TRAUMATIC BRAIN INJURY. HE HAS DONE SOME REALLY IMPORTANT WORK BUT ALSO VERY INTERESTING WORK, SO WE'VE ASKED HIM TO COME JUST SHARE WITH COUNCIL SOME OF WHAT HE'S UP TO. SOME OF YOU MAY HAVE SEEN SOME OF THIS ALREADY AND YOU'VE TOLD IT TO OTHER MEDIA, BUT COLE, WE REALLY THANK YOU FOR TAKING THE TIME TO COME AND TALK WITH US FOR A WHILE TODAY. >> THANK YOU, GUYS. I WANT TO FIRST THANK DR. RALPH, INTEREST THERESA, MARY FOR ASKING ME, THIS WAS A REAL TREAT IT TO COME DOWN AND WORTH GETTING ON 495 TO BRAVE THIS. WE'LL SHIFT GEARS FROM A LOT OF WHAT WE'VE HEARD TODAY TO WHAT MYSELF, MY LAB AND OUR FACEBOOK FOLLOWERS AND SORT OF OUR SOCIAL MEDIA GROUNDED GRASS ROOTS EFFORT FOLKS ARE SO EXCITED ABOUT, AND THAT'S MOBILITY. THIS IS AN ADULT GROUP, AND WE'RE VERY SOPHISTICATED HERE AND THIS IS WHAT A SOPHISTICATED SLIDE LOOKS LIKE. WE DO RESEARCH, NSF, NIH FUNDED RESEARCH. WE'RE NEUROSCIENTISTS AND PHYSICAL THERAPISTS AND DEVELOPMENTAL PSYCHOLOGISTS. WE'RE ALSO FASHION DESIGNERS, MECHANICAL AND ELECTRICAL ENGINEERS, ROBOT CYST, MATERIAL SCIENTISTS, AND ABOUT 35 UNDERGRADUATES PER SEMESTER THAT WORK IN OUR LAB. IT'S A VERY EXTREMELY FUN PLACE AND I START ALL MY TALKS, WHETHER IT'S A TED TALK OR A ROTARY CLUB TO "NATIONAL GEOGRAPHIC" OR WOMEN'S DAY, IF YOU'RE DISSATISFIED WITH YOUR WORK, QUIT YOUR JOB, COME WORK FOR US OR AT THE VERY LEAST, RESPECT OUR WORK ENOUGH TO STEAL IT AND PASS IT ON. WE DO OPEN SOURCE SCIENCE IN WHICH WE PATENT IT, IF YOU'RE INDUSTRY, AND WE GIVE IT AWAY IF YOU'RE INDIVIDUALS. AND WE'VE GOTTEN ADDICTED TO FAST CYCLING, PROTOTYPING, THE PRICE OF PERFECTION IS SOMEWHAT DIFFICULT IN THE TECHNOLOGY AND AS WE SIT TODAY AND BE QUIET, THERE ARE HUNDREDS OF MILLIONS OF KIDS WORLDWIDE THAT ARE ALSO SITTING BEING QUIET AND THEY'RE WORLD CLASS SITTERS AND WORLD CLASS BEING QUIET PEOPLE, AND SO WE TAKE VERY SERIOUSLY OUR TIME. SOME OF THE PROVOCATIVE THINGS THAT WE TALK ABOUT IS DO WE HAVE TIME TO PUBLISH. IS PUBLISHING A DISSEMINATION AVENUE, DO WE HAVE TIME TO GO TO A PRESENTATION, BECAUSE TIME IS OF THE ESSENCE, AND A FIVE-YEAR R1 MEANS WE'VE PUNTED A GENERATION, SO WE DO FIVE-YEAR RO1 RESEARCH ON THINGS THAT MUST BE DETERMINED AND WE DON'T WASTE TIME DOING APPLIED OR BASIC RESEARCH ON THINGS THAT HAVE FACE VALIDITY AND NEED TO GET OUT NOW. WE REALLY TAKE THAT PRESSURE SERIOUSLY. UNDERGRADUATES, MIDDLE SCHOOLERS, ELEMENTARY SCHOOLERS CAN ALSO TAKE THAT SERIOUSLY WHEN THEY REALIZE THAT SCIENCE IS ABOUT URGENCY AND ABOUT WORKING FOR STRANGERS, WITH A BIG HEART AND A BIG BRAIN. SO THAT SORT OF ENCAPSULATES OUR PHILOSOPHY. TO BE HONEST SINCE WE'RE ALL FAMILY, THIS IS WHAT WE'RE AFTER. FOR THOSE OF YOU THAT WERE TERRIBLE 2s OR HAD TERRIBLE 2s AS PARENTS OR ENJOYING TERRIBLE #s, WE ARE YOUR GO-TO WAREHOUSE. WE WANT TO CREATE BAD BEHAVIOR, BECAUSE OUR KIDS -- I MEAN, THIS IS A VERY SWEET PICTURE. THAT CHILD DID NOT NEED INSTRUCTIONS NECESSARILY TO DO THAT. IT'S CLEARLY THAT NOSE AFFORDED LICKING, AND THAT'S PROBABLY -- CAN BE TRACED BACK TO PLACENTAL -- [LAUGHTER] >> IT'S PROBABLY A MATERNAL PROBLEM. BECAUSE REALLY FOR MICHELLE WHO'S IN THE BACK WHO'S MY COLLABORATOR, LONG TERM COLLABORATOR, MOST OF OUR CHILDREN WITH SEVERE MOVEMENT MOBILITY PROBLEMS CAN'T CAN ATTAIN THIS. SOME OF THEM DON'T KNOW HOW TO ATTAIN THIS BECAUSE THEY'VE MISSED THE SOCIALIZATION, THE COGNITIVE NEW LANGUAGE WINDOWS. NOT HARD WINDOWS LIKE YOU THINK OF IN TERMS OF BRAIN PLASTICITY BUT -- AND YOU WALK BY TWO YEARS OLD. BUT IF YOU'RE PEER GROUP -- IN THE FIRST 18 MONTHS TO TWO YEARS, YOU'D LIKELY MISSED THE TRAIN, AND SOCIAL CONDITIONAL USE RULES FOR 2, 3, 4-YEAR-OLDS ARE AN INCREDIBLY RICH ENVIRONMENT. IT'S THE THING THAT DRIVES -- DROVE YOU CRAZY. IT'S THE THING AT NIGHT WHERE IF YOU'VE HAD THESE TYPE OF CHILDREN, THE NORMAL AGGRESSIVE WONDERFUL STRUGGLING KNUCKLE HEAD CHILDREN THAT HAVE FULL MOBILITY AND FULL COGNITION AND PROCESSING, SOMEWHERE IN YOUR BACKGROUND WAS A NIGHTTIME CONVERSATION OF WAIT A MINUTE, HE REALIZES THAT WE WON'T BEAT HIM, AND WE WON'T PUT HIM IN A CLOSET. WE'VE GOT NOTHING. [LAUGHTER] >> AND THEY REALIZE IT AND IT'S THAT FIRST THING OVER BREAKFAST WHERE THEY KNOW THAT YOU KNOW THAT THEY KNOW AND THEY GO, YOU GOT NOTHING. AND SO IT'S A VERY IMPORTANT DYNAMIC THROUGH ANIMAL MODELS, THROUGH HUMAN MODELS, BUT MOST OF THE KIDS THAT MICHELLE AND I WORK WITH CAN ATTAIN THIS. THIS IS WHAT WE'RE AFTER. THIS IS A SNAPSHOT OF PART OF THE LAB AT UNIVERSITY OF DELAWARE. PLEASE COME AND VISIT. I CAN'T UNPACK EVERYTHING THAT'S GOING IN THERE, BUT WE HAVE A PEDIATRIC MOBILITY DESIGN STUDIO. AFTER A YEAR, WE HAVE TO CHANGE OUR NAME NOW BECAUSE IT DOESN'T ENCOMPASS WHAT WE'RE WOO DOING BECAUSE WE'RE BACK TO ADULT TBI. BUT IN THIS ROOM ARE FASHION DESIGNERS, UNDER GRAT WATTS, A CHILD, A FAMILY, BIOME CANNISTS, MOTOR CONTROL EXPERTS, AN NBC CREW FOR BRIAN WILLIAMS "NIGHTLY NEWS." IT'S ALL A MIX OF REALITY. AND WE ARE VERY UNAPOLOGETIC THAT MICRO ENVIRONMENTS AND THAT MICRO ENVIRONMENTS ARE A SOLUTION TO A HUMAN RIGHTS PROBLEM, WHICH IS IMMOBILITY. SO WE'RE GOING TO TALK ABOUT MICRO ENVIRONMENTS IN MY REMAINING 30 MINUTES. HAD THIS GIVES YOU A SNAPSHOT OF THE WORLD -- >> NO! NO! >> IT'S NOT A MYSTERY WHY CONGRESS ACTS THE WAY THEY DO. YOU'VE BEEN DOING THAT SINCE WERE YOU MONTHS. NO, NO! [SCREAMING] >> SO THIS IS A RICH ENVIRONMENT. WHEN MICHELLE AND I WATCHED THAT OR ANY PARENT WATCHES IT, IT'S NOT THEIR PARTICULAR CHILD, YOU REVEL IN THE AMOUNT OF DATA, THE RICHNESS, THE AMOUNT OF COGNITIVE STRUCTURE AND PREDICTIVE ABILITY OF THESE CHILDREN. THIS IS -- TO OUR VIEW, THIS IS THE PINNACLE OF HUMAN EXISTENCE. IT'S A MINDFUL TIME AND MICHELLE AND I TAKE THIS VERY SERIOUSLY. THAT'S THE GOLD STANDARD. THAT'S WHAT EVERY CHILD SHOULD BE ABLE TO DO. WE HAVE A PROBLEM, THOUGH. IN MY AREA OF PEDIATRIC ASSISTIVE TECHNOLOGY IS A LONG HISTORY OF MAKING FROM INDUSTRY AND FROM RESEARCH, IF THERE IS RESEARCH, OF TAKING AN ADULT DEVICE AND DOING TWO THINGS WITH IT. WHAT DO YOU DO WITH AN ADULT DEVICE, I HEARD THAT TODAY, I'VE HEARD THIS SORT OF UNDERCURRENT OF IRRITATION THAT I WANT TO PIGGY BACK ON. WHAT ARE THE TWO THINGS YOU DO WITH ANY ADULT DEVICE TO MAKE IT OKAY FOR KIDS? IT'S GOT TO BE SMALLER, BUT NOW THINK OF MY AREA. YOU'VE GOT TO ALSO DO WHAT? YOU PAINT IT PINK OR BLUE. AND YOU USE SORT OF A TODDLER EUCH EUPHEMISM THAT TOLD THEM, YOU SORT OF GET WHAT YOU GET AND YOU WHAT? YOU DON'T PITCH A FIT. AND WHAT THAT'S DONE HAS SHORT-CIRCUITED FAMILIES AND CLINICIANS AND OTHER STAKEHOLDER FROM EATING A FEEDBACK LOOP OF TELLING THE INDUSTRY THAT THEY'RE CRAZY. SO EVERYBODY COMPLAINS ABOUT ASSISTIVE TECHNOLOGY IN PEDIATRICS BUT NOBODY GETS ON THE HORN. NOBODY PICKS UP THE PHONE UNTIL SUNRISE OR OTHER BIG INDUSTRIES, YOU'RE NOT PROVIDING THIS. IT IS A BIG DISCONNECT. THAT CAN ACTUALLY BE RECONNECTED, WE'VE SEEN THAT OVER THE LAST TWO OR THREE YEARS. SO ONE THING IF I'M TALKING OH TO ENGINEERS AND I'M TRYING TO SHAKE THEM UP IS TO TRY TO THINK BEYOND ASSISTIVE DEVICE. RIGHT NOW IT'S AN ENGINEERING FOCUS. SO IF THEY DO RESEARCH AND DEVELOPMENT WITH US, THE PEDIATRIC POWER WHEELCHAIR LEADER IN THE PLANET, PLANET-WIDE ACCESS, THEY FOCUS ON FOR A NEW PROJECT, YOU GET GREAT ENGINEERS. THE INCREMENTAL STEP IS TO DO HUMAN MACHINE INTERFACING TO REALLY FOCUS ON THAT. I THINK THE LEAP IS TO TALK ABOUT REAL WORLD SOCIALIZATION, TO GO MOO THE REAL WORLD AND HAVE LABORATORY GRADE DATA PICKING UP REAL WORLD TECHNOLOGY. I ALSO PROMISED THEM THAT FROM MY VIEW, IF YOU'RE CURRENTLY OUTSIDE THE MAINSTREAM, THIS IS WHERE TECHNOLOGY VERSUS TECHNOLOGY, TECHNOLOGY AND ASSISTIVE TECHNOLOGY FOR SPECIAL POPULATIONS, ADULT OR CHILD, OR EVEN ACADEMICS IF YOU WANT TO GO BROADER, IS OUTSIDE THE MAINSTREAM CYCLING PROTOTYPING INNOVATION FUNDING. IT'S SLOW. WE HEARD TODAY THAT SOMEONE SAID IN THE AUDIENCE, HOW ABOUT A 3D PRINTER THAT'S IN AN AMBULANCE OR PRIMARY CARE? THE FIRST REACTION SOMETIMES IS, WELL, I DON'T KNOW. IT'S NOT GOING TO BE 10 YEARS. IT'S GOING TO BE 3 YEARS. AND IT MAY BE TWO YEARS, AND YOU MAY NOT KNOW THAT THERE'S A $200 MAKE IT YOURSELF EEG BRAIN INTERFACE. ROBOTIC HANDS ARE A BIG DEAL. HIGH SCHOOLERS ARE MAKING THEM FOR LOCAL PEOPLE IN THEIR COMMUNITY. THAT'S SENT A SHIVER IN THE ROBOTICS COMMUNITY. IF WE DON'T PROVIDE IT, IT WILL NOW BE PROVIDED. AND I THINK THAT IMPETUS IS SCARY ON ONE HAND, BUT IF WE DON'T JUMP ON THE COATTAILS OF THE OUTSIDE MAINSTREAM, WE'RE NOT GOING TO BE OKAY. WE DON'T WANT TO BE INSIDE THE MAINSTREAM, THOUGH. I DON'T THINK WE WANT TO TRY TO EMULATE THE MAINSTREAM. I THINK WE WANT TO CREATE OUR OWN. I LOVE THE TALK THAT I HEARD TODAY WHICH WAS SO UNAPOLOGETICALLY CHILD-DRIVEN AND FAMILY-DRIVEN. WE DO NOT NEED TO COPY AND PEACE ADULT AND MAKE IT SMALLER AND PAINT IT PINK. WE NEED TO THINK ABOUT DEVELOPMENT AND ALL THE BIOCHEMICALS, THE SOCIAL AND CULTURAL ASPECTS OF CHILDHOOD. SO I NEED TO PALATE-CLEANSE YOU A LITTLE BIT. THIS IS THE EASY ONE, WHICH IS PROSTHETICS. IF I HAVE BOTH MY LEGS TAKEN OFF IN AFGHANISTAN OR MY LOCAL COMMUNITY, I'VE 5'11 AND RUN ABOUT A 50 MINUTE 10K, I'D LIKE TO DUNK ON YOU IF I HAVE ARTIFICIAL LEGS AND RUN A 32 MINUTE 10K. I DON'T THINK THAT'S TOO MUCH TO ASK. I DON'T HAVE LEGS. LET'S MAKE THEM SO THAT THEY'RE BETTER. THAT SUBTLE SHIFT, AND WAIT A MINUTE, WE ACTUALLY COULD DO THAT. BRINGS YOU TO THIS, WHERE ART AND BIOMECHANICS AND PROSTHETICS OVERLAP. THERE'S A LOT GOING ON ON THIS SLIDE. I KNOW YOU'VE PROBABLY SEEN THIS SEVERAL TIMES AT COUNCIL, SO WE WON'T HAVE TO GO THROUGH THIS. THERE'S A LOT GOING ON. THE POINT OF THIS, IF YOU WANT COPIES, JUST LET ME KNOW, IS THAT IF YOU GO IN AN EXHIBIT HALL AND SEE ASSISTIVE TECHNOLOGY FOR ADULTS OR FOR -- THIS IS FOR MOBILITY TECHNOLOGY FOR ADULTS OR KIDS, IT'S OFTEN BLACK. AND WHEN YOU ASK THE PEOPLE IN INDUSTRY, WHY BLACK, THEY'LL SAY SO THAT THE POE CUSS IS ON THE FOCUS IS ON THE PERSON. I DON'T THINK THAT IF YOU'RE DRIVING AROUND IN A WORLD WAR II STYLE MOBILITY DEVICE, THAT FOR A CHILD, THE LIGHTEST PEDIATRIC POWER CHAIR IS 150 POUNDS AND REQUIRES RAMPS, A MODIFIED VAN, AND A MODIFICATION OF YOUR HOUSE. IT'S ALSO $25,000, AND FOR AN EXTRA 20 GRAND, CAN YOU GO DOWN TO THE FLOOR. WHAT ELSE? THAT'S IT. NO HBO, NO GAME OF THROANS, NO NOTHING ELSE, YOU GO UP AND DOWN FOR 20 GRAND. THIS IS EXACTLY THE SAME THING THAT I TELL PER MOBILE, SUNRISE, THERE'S A LOT GOING ON HERE. YOU MIGHT NOT OR NOT HAVE NOTICED THERE'S BLU RIMS ON THAT MANUAL CHAIR, BECAUSE THE FOCUS IS NOT THERE. THE FOCUS IS ON ALL THE OTHER THINGS. THIS IS ANOTHER TYPE OF MESSAGE. I LOVE THIS MESSAGE. BECAUSE IT TAKES A VERY DARK AND SINISTER DISEASE PROCESS, PUTS IT OUT IN THE PUBLIC, AND IT'S IMMEDIATELY EMBRACED BY ALL GENDERS, BY MULTIPLE CULTURES, AS A VERY PRO, YOU KNOW, GET 42 DOUBLE Ds IF YOU ALMOST DIED. YOU ARE OKAY TO GO FORWARD WITH YOUR LIFE, AND IT'S THE SAME THING WITH PROSTHETICS. IT'S AN OPPORTUNITY, IT'S NOW AN OPPORTUNITY. LET'S GO FORWARD. AND IT CHANGES THE CONCEPT, IT HAS A VERY DEEP SOCIAL JUSTICE FEEL, AND IT PUTS THE PERSON FIRST. WE LOVE THIS, WE LOVE TO MESSAGE THIS WAY. SO OUR MODEL OF PEDIATRIC ASSISTIVE TECHNOLOGY IS ONE OF SUPERHEROS, AND IT DOESN'T JUST WORK ON THE SUPERFICIAL. MOST SUPERHEROS HAVE FLAWS, LIKE WE ALL DO. THEY OFTEN USE TECHNOLOGY TO BATTLE THEIR NEMESIS, AND OFTENTIMES THEY'RE MOBILE, AND ANYBODY THAT'S BEEN AROUND A 2 OR 3-YEAR-OLD THAT'S TYPICALLY DEVELOPING IT WITH THEIR PEER GROUP, THIS IS NOT UNLIKE PLAYGROUNDS. WHEN YOU GO TO YOUR EARLY LEARNING CENTER AND SEE YOUR DAYCARE PROVIDER, YOUR CHILD CARE TEACHER, THAT'S THE REASON SHE LOOKS HAGGARD, IS THIS IS WHAT -- YOU LEFT CRYING, I DON'T KNOW BY THIS TRANSITION, HE BEGAN TO CHOKE AND LICK. THAT'S THE TYPICAL -- AND THAT'S THE DESIGN FEATURE. THAT'S ACTUALLY THE BAR FOR ASSISTIVE TECHNOLOGY FOR MOBILITY. SO WE'VE WRITTEN ABOUT DEVELOPMENTAL PRINCIPLES, THIS IS NOT ROCKET SCIENCE. BUT IN TERMS OF INNOVATION AND QUICK PROTOTYPING, IT'S STAGGERING. IT HAS TO BE EARLY. WE ALL KNOW THAT. YOU CAN'T WAIT AROUND. IT HAS TO SUPPORT EVERY BEHAVIOR EVERYWHERE FOR EVERYONE WITH EVERYONE AND IT HAS TO DO IT ALL THE TIME. THAT IS AN AMAZINGLY HIGH BAR FOR ENGINEERS. WE'VE GONE OVER DEVELOPMENT INSPIRED A.T., WHAT SHOULD IT LOOK LIKE. THE COST RATIO NEEDS TO BE ROBUST AND FLEXIBLE. LET ME GET INTO WHAT WE'RE DOING. TALKING ABOUT 3D PRINTING, IT CAN GIVE YOU AN EX-OWE SKELETON FOR A CHILD, RUBBER BANDS CAN GIVE YOU THE FORCED DEVELOPMENT, THIS IS A CHILD FOR EXAMPLE BORN WITH DISTAL FUNCTION BUT THE INABILITY TO LIFT THEIR ARMS. SO 7, #, 9 MONTHS, MAYBE UP TO TWO YEARS, YOU'RE NOT ABLE TO LIFT YOUR ARMS TO THE SHOULDER BUT YOU HAVE TERRIBLY GOOD DISTAL FUNCTION PRIMARILY. THAT'S AMAZING. THAT NOTHING'S COME ALONG. -- AND MICHELLE LOBO HAVE NICHD MONEY TO LOOK AT THIS. THIS IS A GREAT ADVANCE, PRINTED ON A # D PRINTER WITH LOW MATERIALS, YOU CAN SEND IT OUT. THIS IS A $3,000 UNIT. THAT IS NOT GOING TO WORK LONG TERM. SO SOMEWHERE BETWEEN THEIR INVENTION OF THE DEVICE, FDA APPROVAL AND THE MEDICALIZATION OF IT, YOU GET TO A $3,000 DEVICE THAT HAS RUBBER BANDS ON IT. YOUR GRANDMOTHER WOULD NOT SUPPORT THAT. AND THAT'S -- WHAT'S THE STANDARD OF CARE? NOTHING. IS THIS A LEAP FORWARD? ABSOLUTELY. I APPLAUD THEM. BUT WE'VE GOT TO DO A LITTLE BIT BET, AND WHERE IS THIS GOING TO END UP LIKELY? IN THE CLOSET. WHY? IT'S A BEAUTIFUL DESIGN, IT'S A LITTLE TOO BIG, IT'S A LITTLE TOO MESSY, MOM HAS TO HAVE A LITTLE BIT TOO MUCH TIME TO PUT IT ON, IT DOESN'T WORK. MICHELLE DEVELOPED A ONESIE WHERE YOU SLIP ON FOR ALL DAY USE THAT HAS PIANO WIRING PLACED IN THERE THAT PROVIDES THESE CHILDREN WITH A TRAMPOLINE EFFECT AND ENCOURAGES SPON FEIGN JUST MOVING AND THE EMERGENCE OF REACHING. SHE PATENTED IT AND SHE'S GIVING IT AWAY ONLINE AND DOING WORKSHOPS. THAT PRESSURIZES THE INDUSTRY. THE INDUSTRY THEN COMES CALLING, WAIT, WAIT, WE'VE HEARD ABOUT THIS AT THE GRASS ROOTS LEVEL. WHAT IS THIS? A ONESIE? AND YOU GET A CATEGORY CALLED FUNCTIONAL FASHION. THAT'S NOT A CATEGORY, THAT'S NOT A THING. IT IS NOW. PEDIATRICS IS LEADING THIS. WE'LL HAVE A FALL FASHION SHOW AT UNIVERSITY OF DELAWARE IN THE THE FALL WITH THESE DESIGNS BY OUR FASHION DESIGNERS. BUT WHO ACTUALLY DESIGNED THEM? 4 TO 6-YEAR-OLDS, MAINLY LADIES, THAT CAME IN WITH -- AND HAD ENOUGH ABILITY TO DRAW THEIR OWN PATTERNS OF WHAT THEY WANTED ON THEIR OWN BODIES. THAT'S THE CYCLE. THAT'S CHILD HAD BEEN DRIVEN DEVELOPMENTAL PRINCIPLES, AND THAT'S GOING TO BE VERY INTERESTING, WE'LL PROBABLY SATURDAY A STARTUP COMPANY CALLED ONESIE PLUS ONE. YOU GET THE SAME ONESIE, JERSEY SHORE ONESIE WITH ALL KINDS OF PATTERNS AND FAKE FUR ON IT IF YOU WANT IT, AND THEN IT HAS A SHEET IT SAYS GO TO YOUR MUSIC STORE, GET TWO, THREE, FOUR, FIVE BUNDLES OF PIANO WIRE AND INSERT. THAT'S NOT A FIVE YEAR, THAT'S A FIVE MONTH. IS IT PERFECT? NO WAY. DID IT GET UNDERARMOR COMING IN TWO WEEKS TO SAY WHAT THE WHAT? YEAH. AND TO GET THESE SAME PRINCIPLES TO TAKE CHILDREN SERIOUSLY, HAD IS SORT OF ALL KID FABRICS. AND THIS IDEA OF THE FUTURE, WHERE YOU'RE ACTUALLY HAVING FABRIC AND FASHION AS A FOUNDATION FOR ASSISTIVE TURNED THE GLASSES, EARRINGS, COATS, BELTS, INTO ACTUALLY PLATFORMS. THERE'S NO NEED THAT YOU NEED TO KNOW THAT I'M BEING ASSISTED BY AN ENDOSKELETON THAT HELPS MY LEGS AFTER A STROKE. I'M TELLING YOU, THE COMMUNITY BUYS IN AND ASKS ME, WHERE DO YOU GET THE MONEY FROM THIS? NICHD. WHAT IS THAT? TELL ME MORE. THAT WILL BE THE AN TECH DOTE OF FLAT NIH FUNDING WHERE THE REMAINDER OF THE COUNTRY OUTSIDE ACADEMICS WENT, THE KARDASHIANS CAN'T FIND A CAR AND PEOPLE LOSE THEIR MIND. SO I THINK THAT HELPS THE ANECDOTE OF WHAT'S GOING ON HERE. I'M TROUBLE AND I KNOW EVERYONE IN THIS ROOM IS TROUBLED BY WHERE WAS THE OUTCRY, RIGHT? WHERE WAS THE LES MIS MOMENT WHERE EVERYBODY WAS LIKE STORM THE CAPITOL? WELL, NOT SO MUCH. THAT'S ON ME. THAT'S ON US, I THINK. THIS IS CALLED A LIVING ROOM. AND IF THE MOM WOULD HAVE SAID SAID -- HARNESS SYSTEMS ARE REALLY INTERESTING. WE HAVE BODY WEIGHT HARNESSES TO SUPPORT BODY WEIGHT. >> THERE YOU GO. >> THI[INAUDIBLE] >> I'M GOING TO CUT IT HERE. THAT'S A FUN IN A BAG. THAT'S A REACTION TO BODY WAITED SUPPORTED -- TRAINING WHERE YOU HAVE A CHILD ON A TREADMILL WORKING ON THE FUNDAMENTALS OF IMPAIRMENT. THE TROUBLE IS IT'S LOW DOSE. HOW MUCH DOES A TODDLER MOVE EVERY DAY? APPROXIMATELY 80% OF THE TIME THEY'RE ALLOWED TO MOVE AND THAT'S CROSS-CULTURAL. TOKYO OR TOPEKA, YOU'RE GOING TO MOVE THAT MUCH. 6 TO 8 TO 10 HOURS. THAT IS AN INCREDIBLY HIGH BAR. IF WE THINK IN BODY COGNITION WISE AND WE THINK MOBILITY IS ONE OF THE BIG DRIVERS OF FAMILY DYNAMICS AND LANGUAGE AND COGNITION, WE'VE GOT TO DO BETTER. MOST KIDS THAT WE SEE, 15 MINUTES TO 25 MINUTES A DAY OF MOBILITY. THAT, WE WON'T GET THERE BY ANYTHING THAT R. BUT A PARADIGM SHIFT. IT'S GOT TO CHANGE. SO YOU'VE GOT TO PUT HARNESS SYSTEMS UNDER CANOPIES. IF WAL-MART WILL SIMPLY RIP OUR PATENT OFF AND MAKE THIS AS A TYPICAL DEVICE, THEN WHAT WILL HAPPEN IS THIS WILL BE $150, AND IT WILL BE SOME KIND OF SUMMER CANOPY WITH A FAMILY ATTACHMENT WHICH IS BASICALLY A PLAY PEN TURNED UPSIDE-DOWN, YOU AND I COULD HAVE A BEER OVER BY THE BARBECUE WHILE YOUR TODDLER CAN ACTUALLY BE SEQUESTERED, RIGHT? SO HE'S ALREADY KNOWN, YOU CAN'T PUT ME IN A CLOSET, YEAH, BUT I CAN PUT YOU IN THE FUN IN A BAG. IT IS FUN, AND YOU GET A 10 BY 10 AREA TO HANG IN. FOCUS GROUPS, FIRST TOM MOMS GO THAT WOULD BE KIEN KIND OF COOL. SECOND TIME MOMS GO, OH, MY GOD. FIRST TIME MOMENTS, HOW MUCH WOULD YOU PAY FOR IT? 200 BUCKS. SECOND TIME MOMS, OH, MY GOD. SO THAT KIND OF THING IS ANOTHER LITTLE TWIST OF WHY NOT MAKE ASSISTIVE TECHNOLOGY THAT'S FOR ALL KIDS DRIVING THE PRICE DOWN AND UNITS UP. THIS IS NOT ROCKET SCIENCE, IT'S JUST THE FIRST ITERATION THAT'S THOUGHT ABOUT TECHNOLOGY FOR KIDS AND FOR FAMILIES. INSTEAD OF GOOD FAMILIES BAD FAMILIES, HOW ABOUT LOOKING AT THE FAMILY DYNAMIC AND FAMILY RHYTHM AND FITTING THAT IN FOR HIGH DOSE. MY PREVIOUS CLINICAL WORLD WAS IN TRAUMATIC BRAIN INJURY. I LOVE WORKING WITH YOUNG AND OLDER ADULTS AFTER TBI. THIS IS AN IDEA OF WHY DON'T WE PUT A HARNESS SYSTEM IN AN ICE CREAM KIOSK. SO THAT BEFORE YOU WALK AND CAN STAND ON YOUR OWN, YOU CAN HAVE SOME KIND OF MEANINGFUL ENRICHED MEMORY VALUED SYSTEM. INSTEAD OF WAITING FOR TWO YEARS FOR YOU TO BECOME MEDICALLY STABLE AFTER YOUR COMA ASCENSION AND THEN START 90 DAYS OF VOCATIONAL REHAB, WHY DON'T WE REVERSE THAT. LET'S USE DEVELOPMENTAL PRINCIPLES LIKE EARLY INTERVENTION AND GIVE YOU A REASON TO WORK ON YOUR COGNITION AND LANGUAGE. THIS IS GOING TO WORK FAST, THE ENGINEERS THAT I WORK WITH, INSTEAD OF TAKING FOUR WEEKS TO BUILD THIS, IT WAS ONE WEEK. YOU CAN'T TELL BECAUSE IT'S NOT SUPPOSED TO TELL THAT THIS IS INSTRUMENTED. HE'S WEARING A FIT BIT, CAMERAS UP ABOVE, SHE'S WALKING ON A -- PLATFORM THAT CAN ALLOW US TO MEASURE. THE CAMERAS ALLOW US TO CODE COGNITION, SPEECH, LANGUAGE. SHE'S ALSO -- FOR EMPLOYABILITY ON ZERO TO 100%. IN FOUR TO SIX WEEKS, 10% EMPLOYMENT TO 70% EMPLOYABLE. THIS IS NOT ROCKET SCIENCE. THIS IS RELATIVELY LOW COST. THE ONE PROBLEM THERE IS THAT HARNESS IS NASTY. THAT'S WHY OTHER PEOPLE ARE WORKING WITH OUR FASHION DESEISES TO MAKE A HARNESS THAT YOU SLIP ON THAT DOESN'T CALL ATTENTION. ALSO THE SOCIAL JUSTICE MODEL OF THIS ALMOST MAKES YOU GET TEARY, BECAUSE THIS IS IN OUR NEW STAR BUILDING WITH ABOUT 700 UNDERGRADUATES AND GRADUATES. THEY COULD CARE LESS WHO SERVES THEM THE ICE CREAM THAT WE BUILD AT UD, THE CREAMERY. THEY WANT THEIR JIMMIES. AND TO HAVE SOMEONE LOOK ACROSS YOUR TBI IMPAIRMENT AND JUST SAY CAN I PLEASE HAVE THE ICE CREAM NOW, MOMMY LIKES HER JIMMIES, FROM A SOCIAL JUSTICE STANDPOINT, IT'S KREEZ. AND ANN AND OTHER SURVIVORS KNOW THAT. THEY'LL WORK 25 MINUTES ON A HOME PROGRAM AND AN HOUR 45 IN THIS KIND OF THING. SO THIS IS ONE OF THOSE MICRO ENVIRONMENTS WHERE WE'RE TRYING TO PRESSURIZE THE SYSTEM AND GO FAST ERFURT. I'M GOING TO TALK REALLY BRIEFLY ABOUT THE RIDE-ON CARS WHICH I THINK IS THE INITIAL REASON THAT PEOPLE ASKED ME TO COME HERE. THIS IS A REACTION TO IF YOU HAVE A CHILD WITH SIGNIFICANT PROBLEM AND THEY'RE GOING TO END UP IN A POWER WHEELCHAIR. MOST TIMES IN THE U.S. AND ABROAD, THEY'RE GOING TO WAIT FIVE TO SEVEN YEARS. FOR ANYONE THAT'S A PHYSIOLOGIST, BIOCHEMIST, ANAT CYST, PUT FIVE TO SEVEN YEARS OF PASSIVE MOTION ON TOP OF THIS. THE REAL UNPACKING IS WE DON'T KNOW WHAT THE POTENTIAL FOR KIDS WITH CEREBRAL PALSY ARE BECAUSE YOU HAVE CEREBRAL PALSY PLUS A MAJOR SECONDARY INVOLVEMENT OF IMMOBILITY. DOWN'S SYNDROME, PLUS IMMOBILITY. IMMOBILITY IS NOT A MOVEMENT THING. IT'S NOT REALLY A MUSCLE AND JOINT AND BONE THING ALONE. IT'S THE TRIGGER FOR LANGUAGE, FOR SOCIALIZATION. MOVEMENTS IN THE FIRST MONTHS OF LIFE, CALL DADDY OVER TO SAY THAT'S MY BIG BOY, LOOK AT YOU, IF YOU DON'T MOVE MUCH, I CAN'T UNDERSTAND YOU. SO THESE GARMENTS ARE NOT NECESSARILY FOR MOVEMENT, THEY'RE FOR SOCIAL SIGNALING AND EVERYTHING IN BETWEEN, SO WE CAN'T WAIT. THIS IS OUR REACTION TO NSF AND NIH FUNDED RO ROBOTICS WORK WHERE WE FOUND A SIX MONTH OLD GET A COGNITIVE AND LANGUAGE BOOST IF WE HAVE THEM DRIVE A JOYSTICK DRIVEN ROBOT. THE TROUBLE IS, FOR CLINICIANS IN THE AUDIENCE, GO ARCHED TO YOUAROUND TOYOUR CONFERENCES AND SPEAK AND HAVE ABOUT SIX MONTHS AT THE END OF THE TALK GO YA-YA YA BUT WHERE DO I GET ONE? DO THAT FOR SIX MONTHS AND YOU FEEL LIKE A COMPLETE FRAUD AND YOU GO BACK TO THE LAB AND SAY WE CAN NEVER DO THIS WORK AGAIN BECAUSE IT'S PROMISING SOMETHING THAT IS NOT GOING TO BE DELIVERED IN A TIME. THE REAL TROUBLE IS THE BLIND SPOT, I THINK, OF NIH AT THAT POINT TO BE FRANK AND ACADEMICS NOW IS THAT NO ONE -- THAT'S NOT GOOD ENOUGH. I GOT TENURE, PROMOTED, ACCOLADES, DISCOVERY CHANNEL, CNN. NO ONE EXCEPT FAMILIES, YOU REALLY SHOULDN'T DO THAT. YOU REALLY SHOULDN'T DO THAT. PROMISE THE SKY AND THEN SAY I DON'T KNOW. THIS IS WHERE MY FEW DISH YAIR YEAR RELATIONSHIP ENDS. WE MADE A TOY STORE AND JOANNE FABRIC AND HOME DEPOT. AND TWO YEARS LATER, THIS PROJECT WILL NOT STOP. AND IT'S BECAUSE IT'S BEEN TAKEN OVER INTO HIGH END ROBOTICS. WE THOUGHT WE WERE REALLY CUTTING EDGE. TROUBLE IS WE DIDN'T HAVE AN OUTPLAN. THE PIPELINE DIDN'T END WITH INDUSTRY BEING THERE. SO WE TURNED TO RACE CARS. WE WENT FROM TWO HIGH END ROBOTS TO -- THESE ARE THE RIDE ON CAR 6-VOLT, 12-VOLT TOY CARS YOU SEE AT TOYS 'R US THAT ARE ALMOST EVERYWHERE. THE CONGO DOES NOT HAVE STABLE CURRENCY OR WATER FOR ITS CITIZENS. IT HAS FOUR DISTRIBUTORS OF RIDE-ON CARS. MY FRIENDS IN THE GAZA STRIP, I SAID YOU GUYS PROBABLY DON'T HAVE RIDE-ON CARS BECAUSE OF THE EMBARGO. I'M LOOKING AT ONE NOW. SO KIDS WANT RIDE-ON CARS, PARENTS FIND THIS, AND IT'S VERY INTEREST PG FROM AN ENGINEERING PERSPECTIVE THAT EVERY YEAR, WE GET HUNDREDS OF NEW MODELS OF VARIOUS TYPES. VARIOUS TYPES FOR US ARE DIFFERENT SEATING SYSTEMS. DIFFERENT MATERIALS. DIFFERENT ELECTRONICS TO PIGGY BACK ON. SO WE'VE WRITTEN THIS UP BUT WE'VE ALSO IN PARALLEL GONE AND PROVIDED WORKSHOPS TO FAMILIES AND CLINICIANS. HOW TO BUILD IT. IN TWO HOURS, I CAN HAVE YOU BUILD A LIGHTNING MCQUEEN OR A MADER TO HOLD YOUR KID. THEY CAN BECOME MOBILE FOR THE VERY FIRST TIME. WE SAT ON FACEBOOK AND NOT SURPRISINGLY, WE HAVE 15, 20, 25,000 PEOPLE THAT WANT TO GET ONE. THE INTERESTING THINGS, WE HAVE 20 GO BABY GOES CLINICAL SITES WORLDWIDE AND WE DON'T HAVE A CLINICAL SITE STRUCTURE. I DON'T WANT TO SAY THIS IN D.C., BUT WE'RE A LITTLE AL QAEDAISH IN THAT PEOPLE JUST DO THESE THINGS AND THEN LET US KNOW THROUGH FACEBOOK, SO THE NETHERLANDS, NEW ZEALAND, SPAIN, PORTLAND, PORTUGAL, POLAND, THEY JUST COME BACK AND SAY, CAN WE USE YOUR TECHNOLOGY, YOUR HARDWARE LIST, AND VIDEOS, AND WE'LL SHARE. AND THAT'S WHAT WE ENVISIONED. A LOT LIKE THE FOOD NETWORK. GO AND LOOK AT CHICKEN PARM, GO MAKE IT YOUR WAY AND SHARE CHICKEN PARM GALLOWAY WITH EVERYBODY. THAT'S THE MODEL. INDUSTRY CAME TO US AND WENT, YOU KNOW YOU'RE LIKE FARMING MASSIVE AMOUNTS OF DEEP TRADE SECRETS. CAN WE HIRE YOU? WHAT DO YOU MEAN? THOSE THINGS CALLED MOMS, THEY'RE CONSUMERS AND THEYE TELLING YOU FROM THE HEART WHAT THEY'LL PAY, WHAT THEY WANT. OH, OKAY. YES, HOW MUCH WOULD THAT BE? SO NOW WE HAVE THIS WHOLE INDUSTRY WING OF THE LAB WHERE INDUSTRY COMES TO US AND SAYS WE WANT TO DO THE SAME THING THAT GO BABY GO RIDE ON CARS DO BUT WITH OTHER TYPES OF TECHNOLOGY. YOU CAN LEARN MODIFICATIONS, PVC PIPE, ACTIVATION MODIFICATIONS BS STEERING MODIFICATIONS. THERE'S A NEW ASSISTIVE TECHNOLOGY CLUB THAT WILL GO AROUND THE COUNTRY THIS SUMMER, AS UNDERGRADUATES GIVING OUR WORKSHOPS. WE HAVE 25 TO 30 WORKSHOPS SCHEDULED FOR THE SUMMER. WE CAN'T POSSIBLY DO THEM ALL. AND WE HAND THEM OUT TO PEOPLE. ANY CLINICIAN THAT WANTS TO GO DO THAT. ABOUT 100 TO $150 A CAR, MODIFICATIONS ARE ABOUT THE SAME. DO YOU THIS AT HARDWARE STORES, TAKES ABOUT TWO, THREE HOURS. DIFFERENT MODES. SOME CLINICS ACTUALLY HAVE LIBRARIES FOR THE VERY FIRST TIME. YOU CAN'T HAVE A LONER LIBRARY OF $25,000 PIECE OF EQUIPMENT THAT'S 150 POUNDS AND REQUIRES A RAMP. BUT THESE ARE 25 POUNDS AT MOST AND GOES IN THE BACK SEAT OF A HONDA CIVIC. YOU CAN GO TO A FOUR PERSON ESCALADE THAT WOULD TAKE TO YOU ANNAPOLIS, PLEAS PLENTY OF BIGGER CARS BUT THOSE ARE THE SMALL ONES. YOU CAN USE IT FOR A LOT OF THINGS, THERAPISTS USING IT AS LANGUAGE DEVICES, OCCUPATIONAL AND PHYSICAL THERAPISTS ARE USING IT AS COTREAT ENVIRONMENTS. FAMILIES DO IT AND PROBABLY FAMILIES NOW LEAD IT. THEY'RE THE INNOVATORS OF THIS. WE STARTED 6 TO 8 MONTHS OF AGE. SO WE ALSO GO HIGH FEK AND LOW TECH, IF WE'RE GOING TO STUDY SOMETHING, WE'RE GOING TO STUDY IT WITH LABORATORY GRADE DATA. GPS, WHERE ARE YOU. SHOCKINGLY THE POWER CHAIRS STAY INSIDE THE HOME, INSIDE THE SCHOOL, NO WONDER OUR KIDS AREN'T GOING OH GET INVITED TO BIRTHDAY PARTIES AND MENTAL HEALTH QUESTIONNAIRES AT 20 AND 30 ARE GOING TO HAVE KIDS THAT DW TO STANFORD, WORK AT BOEING AND HAVE ONE POINT -- PEOPLE TO CALL IN TIMES OF STRESS. THAT'S THAT DARK SIDE OF THIS KIND OF TOY. WE'VE GOT TO DO BETTER, I'VE GOT TO KNOW WHERE YOU ARE AND WHY YOU WENT THERE AND WHY YOUR PARENTS DECIDED TO DO THAT. WHAT FLAVOR KIDS? ALL TYPES. WE'VE HAD VENT KIDS, ALL THE WAY TO HIGH LEVEL KIDS, INPATIENTS, OUTPATIENTS, LONG-TERM CARE FACILITIES AND SCHOOL, THE SPECTRUM IS JUST IMPAIRMENTS, ACTIVITY AND PARTICIPATION. I'LL SHOW YOU SOME CARS THAT DON'T JUST SIT DOWN DRIVE. WE HAVE COTREAT AND COMMUNITY GROUPS ARE THE BIG THING NOW. GO BABY GO COMMUNITY GROUPS, SPECIAL RACER PROGRAMS. COMMUNITY SERVICE ORGANIZATIONS PULLING TOGETHER TO SIMPLY IDENTIFY PARENTS AS SOON AS POSSIBLE. WE KNOW YOU HAD A PRETERM BABY, JANE TOLD JAN, JAN TOLD BILL, WHENEVER YOU'RE READY, WE CAN BUILD A RACE CAR WITH HIM. HE'S ONLY SIX MONTHS, HE'S GOT SPASTIC THIS, THAT AND THE OTHER. WE DON'T CARE. WE COME DOWN TO THE CHURCH AND BUILD IT AND WE HAVE FUN. BEFORE YOU EVEN HAVE A CHANCE OF WONDERING WHAT THE EXPECTATIONS ARE, YOUR KID'S IN A RACE CAR, OR A BARBIE SMART CAR. IT'S NOT PERFECT, IT'S NOT GOING TO MAKE YOU A GREAT FAMILY, BUT IT SHA IT TERES THAT EXPECTATION, IF HE'S GETTING IN A RACE CAR AT 6 MONTHS, MAYBE IT'S NOT AS SCARY, AND MAYBE IN THE 18 PHYSICIAN VISITS EVERY WEEK, I DON'T HAVE TO GET TOTALLY FREAKED OUT. THE SIT STAND POWER WALK IN CAR IS THE LATEST AND GREATEST WE APPLIED FOR FUNDING FOR. THIS IS IN ONE DEVICE, YOU DRIVE IT SITTING, STARTING AT 6 MONTHS, THEN MOM AND YOUR CLINICIAN DETERMINES WHEN YOU'RE READY FOR THE STANDING CAR, IN THE SAME CAR, AND YOU STAND UP ON THE PLATFORM AND YOU DRIVE IT. YOU TURN IT ON BY STANDING UP, LIKE A SEGUE. GETS GET ADDICTEKIDS GET ADDICTED, THEN WE CHANGE IT, YOU HAVE TO WORK A LITTLE BIT. THAT MAKES PHYSICIANS AND PHYSICAL THERAPISTS FLIP OUT. THAT'S BONE HEALTH, THAT'S KIDNEY,'S ALL THE BENEFITS OF DYNAMIC STANDING. BALANCE IN THE BACKYARD, 45 MINUTES OF BALANCE CHALLENGES VERSUS 8 MINUTES OF MOM SCREAMING AT YOU, PLEASE STAND, PLEASE STAND, PLEASE STAND, PLEASE STAND. THEN YOU DROP THE BOTTOM OUT AND YOU POWER WALK YOURSELF AT A VERY SLOW SPEED AROUND. WHO DETERMINES WHAT MODE? MOM DOES, JUST LIKE VELCRO AND TIE SHOES. LET'S WORK ON TYING, WE'VE GOT TO GET -- COME ON, COME ON, COME ON. THAT KIND OF THING. SO THIS IS PATENTED AND BEING TAUGHT TO FAMILIES HOW TO DO IT. THAT'S A ZERO TURN RADIUS, $300 DEVICE THAT'S PROPORTIONAL CONTROL AND GOES INDOOR AND OUTDOOR. THAT SENT SHIVERS DOWN INDUSTRY, THAT'S WHAT GOT US OUR BIG INDUSTRY DEVELOPMENT CONTRACTS AND THE BIG CLAUSE, PLEASE STOP BUILDING THESE AT WORKSHOPS. ABSOLUTELY NOT. WE CAN PROBABLY CHARGE $1,500 ONCE IT GOES TO A UNIVERSAL SUPPLIER. I'M LIKE, AWESOME, I'M GOING TO GET IT TO A HUNDRED BUCKS, JUST BECAUSE YOU SAID THAT. WE HAVE A VERY FRIENDLY KIND OF BANTERING RELATIONSHIP WITH VEE AND THEY KNOW AND THEY GO TO OUR FACE WOOFACEBOOK AND IT'S NOT US. THEY'RE TERRIFIED. THEY'RE TERRIFIED OF THIS GRASS ROOTS EFFORT, AND WE'RE EMPOWER AND THEY ACTUALLY ARE EMPOWERED BY THAT TOO. SO GLOBAL DOMINATION. ILTS NOIT'S NOT US. WE TALK ABOUT SORT OF GRABBING ON TO THE COAT TAILS AND I JOKED A YEAR AGO, AND NOW MICHELLE AND I DRIVING HERE, WE'RE LIKE, WE'RE A LITTLE BIT OF A FLITTER ON THAT WE HAVE TO KEEP GOING FAST ENOUGH BECAUSE THE FACEBOOK COMMUNITY ARE NOW STARTING TO GET TOGETHER. I'M GOING TO BE IN CLEVELAND NEXT WEEKEND, JANE. HOW ABOUT WE GET TOGETHER AND MEET WITH YOUR GROUP AND MY GROUPS DRIVING OUT, WE HAVE A SOCCER GAME. THAT'S' MERNLINTHERE'S EMERGING SELF COORDINATING CONFERENCES. I CAN'T COMPETE WITH THAT. I HAVE TO GO FASTER AND FASTER AND FASTER. WE THINK WE'LL HAVE MAYBE 200 GO BABY GO PLANETARY SITES. ONE THING THAT DOESN'T HELP THAT I'LL LEAVE YOU WITH, IS WHEN THE LAY PRESS COMES AND ACTUALLY GETS IT. AND THEY'VE JUST GOTTEN IT. WE'RE ABOUT TO DO A TED TALK, "NATIONAL GEOGRAPHIC" IS LIKELY TO PUT US ON THE COVER AT THE END OF THE SUMMER. THAT HELPS BUT IT REALLY DOESN'T HELP BECAUSE WE'RE JUST RESEARCHERS, WE DON'T HAVE AN INDUSTRY PIPELINE. I'LL PLAY A LITTLE BIT OF THIS. >> IN THE CLASSROOM, SHE'S GOT A LOT OF REALLY GOOD FRIENDS. IN MORE OPEN AREA SITUATIONS, HE CAN KIND OF GET A LITTLE LEFT BEHIND. >> I HAVE LOTS OF KIDS THAT AREN'T INVITED TO BIRTHDAY PARTIES. EVER. FRIENDS ARE HARD TO MAKE WHEN YOU'RE NOT MOBILE. >> WHEN HE'S ON THE BIKE, HE JUST OFTEN GETS THIS REALLY BIG LIKE HAPPY GRIN ON HIS FACE. >> I WANT YOU TO FEEL LIKE YOU HAVE CONTROL OVER YOUR OWN HAPPINESS. AND I KNOW FOR YOUNG CHILDREN, THAT'S ATTACHED TO YOUR MOBILITY. HERE WE ARE, A VARIETY OF CARS THAT WE CAN MIX AND MATCH. I'M THE FOUNDER OF GO BABY GO, A PROJECT TO INCREASE EXPLORATION IN KIDS WITH SPECIAL NEEDS. WE TAKE OFF THE SHELF RIDE-ON CARS AND WE MODIFY THEM LIGHTLY TO GET THEM GOING. THE MATERIALS OF INTEREST ARE PVC, NUTS AND BOLTS, THINGS YOU GET AT YOUR HARDWARE STORE. I CAME IN 2000 AND STARTED A TRADITIONAL RESEARCH LAB, LEARNING HOW KIDS LEARN TO MOVE THEIR BODIES. THERE ARE NO COMMERCIALLY AVAILABLE POWER WHEELCHAIRS FOR CHILDREN THAT ARE UNDER 3. THE OTHER FRUSTRATION FOR MYSELF AND A COUPLE OF SUMMERS BACK WITH TOY TOYS 'R US JACKED UP ALL THE SMALL CARS, TOOK THEM OFF THE SHELF, THE MANAGER COMES RUNNING, WHAT ARE YOU DOING? HAVING A LAB MEETING, OF COURSE. WE WENT AND SAW THAT FOR $100 FOR RIDE-ON CAR AND $100 WORTH OF MATERIALS FROM HOME DEPOT, WE CAN GET THE SAME KIND OF MOBILITY, THAT WAS TOO GOOD TO BE TRUE. FAST FORWARD TWO OR THREE YEARS, AND NOW WE'RE MODIFYING RIDE-ON CARS ALL OVER THE COUNTRY, WE'RE IN FRONT OF 20 TO 50 FAMILIES, CLINICIANS AND WORKSHOPS TEEP TEACHING THEM HOW TO MODIFY CARS. WE PROVIDE VERY BASIC YOUTUBE VIDEOS THAT PARENTS AND CLINICIANS CAN VIEW, THEY CAN BUILD A CAR OFF OF THEM, COMBINE THAT WITH THE MANUAL THAT WE SEND OUT, HAVE AN ELECTRICAL OR MECHANICAL ENGINEER COME BY AND CERTIFY IT, YOU'RE READY TO GO. >> YOU CAN SEE A VERY TYPICAL DESIGN PLATFORM. >> I DON'T KNOW WHY WE FELT THE NEED TO GIVE IT AWAY EXCEPT I THINK EVERYBODY WOULD DO THAT. THERE'S NO REASON TO HOLD ON TO THIS AND FIGHT FOR A TERRITORY WHEN THERE'S LITERALLY HUNDREDS OF THOUSANDS OF KIDS ALL OVER THE WORLD TODAY SITTING STILL. NOW IT BECOMES A CHESS MATCH OF HOW QUICKLY WE CAN GET IT OUT. WE'RE BRINGING CHILDREN IN FROM THE COMMUNITY INTO THE EARLY LEARNING CENTER GYM. PLOP EVERYBODY DOWN IN A CAR, INVITE OUR TODDLER AND PRESCHOOL FRIENDS TO JUST PLAY, THE ADULTS BACK OFF, AND YOU GET A WHIRLWIND OF SOCIALIZATION AND MOBILITY. >> SHARE A NEVER HA SARAH NEVER HAD A REAS ON TO HOLD HER HEAD UP. WHEN SHE DRIVES THE RIDE-ON CAR, SHE HAS A REASON. THE ACCELERATOR IS BEHIND HER HEAD. XANDER HAS A BIG 4 BY 4. BY MAKING IT A SIMPLE SWITCH THAT YOU DON'T HAVE TO STAND UP TO MAKE IT GO, IT REQUIRES HIM TO HAVE TO GET STRONGER IN HIS LEGS, STRONGER BONES, AND THAT WILL GET HIM READY TO THROW THOSE CRUTCHES AWAY. THAT'S EXACTLY WHAT WE'RE AFTER. THE BONDING, AND XANDER EVEN MENTIONED, WHY IS HE FOLLOWING ME AROUND? IT'S LIKE, BECAUSE YOU'RE A SUPERHERO. >> WHEN HE USES THE STAND-UP CAR, NOT ONLY CAN HE KEEP UP WITH HIS FRIENDS, BUT SOMETIMES HIS FRIENDS ARE TRYING TO KEEP UP WITH HIM. SO IT KIND OF PUTS HIM MORE IN A PLACE OF LIKE BEING THE LEADER AS OPPOSED TO JUST BEING THE FOLLOWER. >> IT'S A MOTORCYCLE. >> CHASING AFTER A CHILD YELLING, YOU BETTER COME BACK RIGHT NOW YOUNG MAN OR YOU'RE GOING TO GET RUN OVER. THERE ARE LOTS OF KIDS THAT DON'T GET YELLED AT OR RUN AFTER. THEY'RE GOING TO DRIVE AWAY FROM YOU. SO WHEN XANDER RUNS AWAY FROM HOME, THEN I KNOW WE'RE GOOD. THIS IS THIS LAST SLIDE, AND THIS IS AFTER A WORKSHOP. I GOT A LITTLE EMAIL FROM A BIG BROTHER THAT SAID, YOU KNOW, DEAR DR. COLE, I REALLY LIKE ALL YOUR STUFF AND HE WENT ON, YOU COULD TELL MOM WAS RIGHT BEHIND MAKING SURE, AND AT THE END SHE MIGHT HAVE TURNED AWAY OR SOMETHING AND HE ALMOST PUT A PS OF, YOU CREATE A MONSTER, MY BROTHER GETS ALL THE ATTENTION, YOU JUST GAVE ME SORT OF A FLARE THE LAST -- IT WAS AWESOME. IT WAS SO GREAT. BUT THIS LITTLE GUY ON THE LEFT IS SEVERELY INVOLVED, LIKELY WILL NOT WALK, LIKELY WILL NOT SIT BY HIMSELF, AND IS HEADED TOWARD A PEDIATRIC POWER CHAIR, BUT IT DOESN'T MEAN IN THE FIRST COUPLE OF YEARS, DON'T NEED TO BE HIGHLY MOBILE. SO THANKS A LOT, I REALLY APPRECIATE THE PLATFORM TO TALK TO YOU GUYS. [APPLAUSE] >> DON'T LEAVE YET. YOU'RE NOT FINISHED. THEY MAY WANT TO GRILL YOU. WE DO HAVE A FEW MINUTES IF ANYONE HAS ANY QUESTION OR COMMENT FOR COLE. THOUGHTS? REALLY IS AN IMPRESSIVE DISPLAY OF LOTS OF THINGS, I THINK. >> I JUST WANT TO THANK YOU FOR YOUR COMMITMENT TO SOCIAL JUSTICE AND NOT WANTING TO TAKE THIS TO MARKET, THAT'S THE COOLEST THING! THANK YOU SO MUCH. [APPLAUSE] >> I HAVE TO SAY THE PARALLEL PROCESS OF PATENTING AND PROTECTING IT AGAINST OR ENCOURAGING INDUSTRIES TO PAY IN FOR SUSTAINABILITY WAS ONE THING, BUT REALLY LETTING IT GO IS A SCARY THING BECAUSE IN ACADEMICS, OFTENTIMES PATENT PLANKING PLAQUES BEHIND YOU, IT'S THE END OF THE PIPELINE. SOME OF THE THINGS IN THE ACADEMIC WORLD, WE GET A LITTLE JADED SOMETIMES IN THE LAB BECAUSE FOR EXAMPLE, MICHELLE WAS FEATURED IN THE "NEW YORK TIMES," BUT SHE WAS FEATURED IN THE "NEW YORK TIMES" FOR A CONCEPTUAL GARMENT THAT'S NEVER REALLY PLANET WIDE MADE SOMETHING, BUT YOU CAN SORT OF BUY IN TO THE HYPE AND GO, OH, THAT'S THE END. WITH THE FACEBOOK, AND I WOULD ENCOURAGE ALL SCIENTISTS TO HAVE A SOCIAL INTERACTION WITH YOUR COMMUNITY, AND IF YOU'RE STUDYING SALT REGULATION, TALK FRIED CHICKEN. THERE'S A WAY TO MESSAGE YOUR SCIENCE THAT MAKES IT CRITICAL AND WE ALL HAVE A LOVE OF THE SCIENCE. THE MESSAGING HAS TO BE BETTER OR PEOPLE WON'T REALIZE IF THEY DON'T SUPPORT NIH, THEN YOUR GRAND KID'S PARKINSON'S WILL BE JUST LIKE YOUR -- YOUR GRAND DAD'S PARKINSON'S. NOTHING WILL CHANGE. BUT I THINK GIVING IT AWAY IS A BIG DEAL FOR US. THANKS. >> THANK YOU AGAIN VERY MUCH FOR TAKING THE TIME TO BE HERE AND MORE IMPORTANTLY FOR THE WORK THAT YOU DO AND IT'S CLEAR FROM THE LAST COMMENT FOR THE WAY YOU DO IT AND THE SPIRIT YOU BRING TO IT IS, I THINK, SOME LESSONS THAT GO WELL BEYOND THE SPECIFIC AREA OF SCIENCE THAT YOU'RE INVOLVED IN, SO THANKS VERY MUCH. AND IN SOME WAYS, A CONTINUATION OF THIS THEME, IN TERMS OF AGAIN GOING BACK TO A CORE PART OF NICHD'S MISSION OF RECONSTITUTING, PART OF WHAT DUANE TALKED ABOUT BEFORE IN TERMS OF BOB COOKE'S CONTRIBUTIONS TO REALLY CHANGING IN SOME WAYS SOCIETY. I WANT TO WELCOME SOMEONE WHO CERTAINLY NEEDS NO INTRODUCTION TO THIS GROUP. SOME OF YOU MAY REMEMBER A WOMAN WHO USED TO WORK FOR US, WITH US, NAMED YVONNE MADDOX BEFORE SHE WENT ON TO NEW CAREERS. WE'RE GOING TO EMBARRASS YVONNE PERSONALLY A LITTLE LATER IN THE PROGRAM, BUT BEFORE WE DO THAT, WE'VE ASKED HER TO JOIN MELISSA PARISI, WHO IS CHIEF OF OUR INTELLECTUAL DISABILITIES BRANCH, FOR THE TWO OF THEM TO GIVE US AN UPDATE ON DOWN'S SYNDROME CONNECT. SO DR. MADDOX, IT SAYS HERE WELCOME BACK. I REFUSE TO ACT AS THOUGH YOU'VE BEEN AWAY AT ALL. SO WE WELCOME AGAIN TO THE STATE YOUR NAME AS USUAL. >> THANK YOU, ALAN. I WAS SITTING BACK THERE THINKING AS WE WERE LOOKING AT THE NUMBER OF COUNCILS THIS REPRESENTS, I'VE ATTENDED 114 OF THE NICHD COUNCILS. AND WITH THE EXCEPTION OF TWO IN WHICH WE HAD TO HAVE A DIFFERENT LOCATION BECAUSE OF WEATHER AND THE INCLEMENT WEATHER HERE IN WASHINGTON AT THE TIME OF OUR COUNCIL MEETING, WE'VE HAD THEM ALL HERE ON THE SIXTH FLOOR, BUT I TRIED TO DO A RESEARCH EXPERIMENT TO FIGURE OUT HOW MANY TIMES WE MET IN CONFERENCE ROOM SIX VERSUS HOW MANY TIMES WE MET IN CONFERENCE ROOM 10, I HAVE TO TELL YOU THERE'S A VERY EXCITING SORT OF ASPECT OF THIS FOR ME, BECAUSE IT DEPENDS ON WHAT END OF THE TABLE YOU USE AND HOW YOU CAN SEE THE STAFF AND HOW YOU SORT OF RELATE TO WHAT'S GOING ON IN THE INSTITUTE. BUT I AM VERY PLEASED TO BE HERE AND TO GIVE YOU AN UPDATE ON THE NIH DOWN'S CYS DOWN'S SYNDROME BUT HOW IT RELATES TO DOWN'S SYNDROME CONNECT, THE REGISTRY. YOU MAY RECALL BACK IN SEPTEMBER OF LAST YEAR, 2013, WE LAUNCHED THE DOWN'S SYNDROME REGISTRY, AND IN CONVERSATIONS WITH STAFF HERE AT NICHD, SPECIFICALLY WITH DR. PARISI WHO IS CHIEF OF THE INTELLECTUAL AND DEVELOPMENTAL DISABILITIES BRANCH, DR. MARY LOU, PROGRAM MANAGER FOR THE DOWN'S SYNDROME PORTFOLIO, FOR ONE OF OUR SCIENTISTS IN THE INTELLECTUAL DEVELOPMENTAL DISABILITIES BRANCH AND LISA KACER, DIRECTOR OF OFFICE OF LEGISLATION AND PUBLIC OUTREACH. IT HAS BEEN JUST A WONDERFUL OPPORTUNITY TALKING TO THEM AND SEEING HOW THE REGISTRY HAS DEVELOPED AND SOME OF THE ACTIVITIES THAT WE ARE PLANNING TO DO AND TO USE THE REGISTER FOR AS WE MOVE FORWARD. SO THIS IS JUST AN OPPORTUNITY TO GIVE YOU AN UPDATE ON WHERE WE ARE, AND MELISSA WILL BE SHARING THE PRESENTATION WITH ME. MELISSA SERVES AS THE P.I. ON THE DOWN'S SYNDROME REGISTRY BECAUSE WE HAD TO HAVE THIS PROGRAM TAKEN THROUGH THE IRB, BECAUSE WE WILL BE WORKING WITH HUMAN SUBJECTS, AND SHE SERVES AS OUR P.I. SO SHE'LL BE FOLLOWING ON MY PRESENTATION WITH SOME OF THE THINGS THAT WE'RE PLANNING TO DO WITH THE REGISTRY AND IN PARTICULAR GIVE YOU SOME GUIDANCE AS IT RELATES TO HOW THE REGISTRY WAS SET UP AND ALSO ABOUT NEXT STEPS AS IT RELATES TO THE DOWN'S SYNDROME RESEARCH PLAN. NOW ONE OF THE THINGS THAT WE WERE HOPING TO ACCOMPLISH IN THIS PRESENTATION THIS MORNING AND WE RECOGNIZE WE ONLY HAVE 15, 20 MINUTES, IS THAT WE WANT WANTED TO GIVE YOU SORT OF A SENSE OF DOWN'S SYNDROME AND ITS IMPORTANCE TO THIS INSTITUTE, BUT ACTUALLY TO ITS IMPORTANCE TO CHILDREN, ADULTS AND THEIR FAMILIES. TO GIVE YOU A SENSE OF WHERE OUR RESEARCH MIGHT BE GOING, AND WE HAD A MEETING HERE ON MAY 7TH WITH ALAN AND DR. CHRIS AUSTIN, WHO IS DIRECTOR OF THE NATIONAL CENTER FOR ADVANCE IN TRANSLATIONAL SCIENCES TO GIVE US A SENSE OF MAYBE WHAT WE MIGHT BE ABLE TO DO IN TERMS OF DEVELOPING SOME NEW THERAPIES FOR DOWN'S SYNDROME. WE ALSO WANT TO DISCUSS THE IMPORTANCE OF PUBLIC PRIVATE PARTNERSHIPS, PARTICULARLY AS YOU RELATE YOUR RESEARCH TO INTELLECTUAL AND DEVELOPMENTAL DISABILITIES, THE SOCIAL ISSUES CONCERNING WITH RESEARCH IN THIS AREA ARE JUST CRITICAL AND WE HAVE TO BE MINDFUL OF THOSE. WE WANT TO DESCRIBE HOW THE ADVOCACY GROUPS HAVE REALLY HELPED US TO MOBILIZE THE DOWN'S SYNDROME RESEARCH AGENDA, AND THEN WE'RE GOING TO GIVE YOU SOME UPDATES ON THE STATISTICS OF WHAT WE'VE BEEN ABLE TO GLEAN AS FAR AS REGISTRANTS WHO HAVE ACTUALLY SIGNED UP FOR THE REGISTRY. YOU ALL ARE VERY FAMILIAR WITH DOWN'S SYNDROME. MANY OF YOU AROUND THIS TABLE HAVE COMMENTED TO ME A NUMBER OF TIMES ON WHAT WE ARE ABOUT HERE AT NICHD WHEN IT COMES TO DEVELOPMENTAL DISABILITIES BUT ALSO ABOUT DEVELOPMENT IN GENERAL. WE DO KNOW IN RECENT YEARS, IT'S BEEN THE BASIC RESEARCH OF NICHD AND OTHER INSTITUTES AS WELL, BUT THAT REALLY SHED A LOT OF LIGHT ON WHERE WE MIGHT GO IN TERMS OF UNDERSTANDING, BETTER UNDERSTANDING HOW TO TREAT DOWN'S SYNDROME AND ALSO NICHD HAS BEEN VERY INSTRUMENTAL, MOST PEOPLE PERHAPS DO NOT KNOW THIS, IN DEVELOPING MODELS FOR DOWN'S SYNDROME, THE DOWN'S SYNDROME MOUSE MODEL THAT WE'VE SUPPORTED FOR YEARS, THAT HAS BEEN DEVELOPED AT JACKSON LABS HAS BEEN SOMETHING THAT WE'VE BEEN SUPPORTING THROUGH A CONTRACT. THE PARTNERSHIPS THAT WE'RE REALIZING THESE DAYS THAT ARE COMING FORTH TO HELP US WITH THIS VISION OR A NEW VISION FOR DOWN'S SYNDROME HAS REALLY BEEN VERY DIFFERENT IN MANY WAYS BECAUSE WE DO FEEL THAT THE PHARMACEUTICAL INDUSTRY SHOULD BE A PART OF ANY TYPE OF PARTNERSHIP, BUT THE ADVOCACY ORGANIZATIONS HAVE REALLY BEEN VERY, VERY SUPPORTIVE AND FOR THOSE OF YOU WHO KNOW THE NICHD MISSION, YOU KNOW THAT WE HAVE SOME FRIENDS, BUT YET MANY TIMES A LOT OF ADVERSARIES AS WELL BECAUSE EVERYBODY WANTS TO SEE THEIR RESEARCH SUPPORTED, BUT WE'VE GONE AT IT VERY, VERY STRONG AND A VERY HEALTHY RELATIONSHIP WITH THE DOWN'S SYNDROME ORGANIZATIONS AND THEY'RE PLAYING A CRITICAL ROLE AND NOT ONLY PROVIDING MAYBE SOME LOBBYING FOR US THAT WE CANNOT DO BUT ALSO SOME THOUGHTS ABOUT HOW THEY MIGHT BE ABLE TO PROVIDE SOME FUNDING BECAUSE MANY OF THEM ACTUALLY DO MAKE GRANT APPLICATIONS. WHILE THE RESEARCH IS MOVING FORWARD, I MUST SAY TO YOU, THOUGH, THAT THERE ARE MANY CHALLENGES. THERE ARE NOT JUST CHALLENGES IN TERMS OF RECRUITING INDIVIDUALS THROUGH TRIALS BUT ALSO THERE'S CHALLENGES ASSOCIATED WITH HAVING ENOUGH INDIVIDUALS WHO ARE RECRUITED INTO TRIALS, AND WE REALIZE THAT WE NEED CHAMPIONS TO REALLY EXECUTE OUR MISSION THAT IS IMPORTANT AS IS HELPING TO IMPROVE THE LIVES OF FAMILIES AND MOST IMPORTANTLY INDIVIDUALS LIVING WITH DOWN'S SYNDROME. THE OTHER THING THAT'S QUITE, I THINK, AN AREA IN WHICH WE KNOW A LOT ABOUT IS THAT THERE ARE A LOT OF CO-MORBIDITIES ASSOCIATED WITH DOWN'S SYNDROME. WE NEED TO THINK ABOUT IT FROM THE PERSPECTIVE OF LEARNING IT AND MEMORY. BUT WHEN IT COMES TO CONGENITAL HEART DEFECTS, IT'S THE MOST COMMON OF ALL THE BIRTH DEFECTS, AND WE ARE THE INSTITUTE THAT HAS A BIG ROLE TO PLAY IN BIRTH DEFECTS. WE ALSO KNOW THAT THERE ARE DYSFUNCTIONS ASSOCIATED WITH THE IMMUNE SYSTEM WHICH MEANS THAT THEY HAVE HIGH INFECTIONS AND ALSO THEY HAVE A HIGH INCIDENCE OF CHILDHOOD LEUKEMIAS, SO THERE ARE MANY, MANY WAYS IN WHICH WE CAN BRING OTHER INSTITUTES AS WELL AS OTHER ORGANIZATIONS INTO OUR FIELD. THE RESEARCH BENEFITS HAVE ALREADY BEEN REALIZED IN THE SENSE THAT THOSE LIVING WITH DOWN SYNDROME ARE LIVING MUCH LONGER TODAY. WE SEE THAT INDIVIDUALS WITH DOWN'S SYNDROME, YOU'LL SEE FROM AT LEAST ONE OF OUR SLIDES, LIVE TO BE IN THEIR 60s TODAY, DECADES AGO, THAT WAS NOT POSSIBLE. THE OTHER THING WE ARE HOPING THAT WE CAN DO IS TO IMPROVE THE QUALITY OF LIFE FOR THOSE WHO LIVE LONGER. SO IT IS ABOUT HAVING ANTIBIOTICS IN PLACE, TO HAVING HEART SURGERY IN PLACE, BEING ABLE TO LOOK AT SOME OF OF THE CO-MORBIDITIES AS IT RELATES TO SLEEP APNEA, GASTROINTESTINAL PROBLEMS, ET CETERA. BUT WE HAVE BEEN FOCUSING MAINLY ON THE ISSUES ASSOCIATED WITH LEARN AND MEMORY. SO MANY OF THE ADVANCES THAT SEEM TO BE ON THE FOREFRONT ARE ADVANCES IN PHARMACEUTICALS THAT ARE USING GABA RECEPTOR ANTAGONISTS OR BETA AT NER JIK AGONISTS TO GIVE US THE SENSE OF MAYBE WHAT WE CAN DO TO IMPROVE LEARNING AND MEMORY. MANY OF THESE STUDIES OBVIOUSLY BEGAN IN ANIMAL MODELS, BUT WE DO HAVE ONE PHASE TWO PHARMACEUTICAL TRIAL THAT'S ON THE WAY. THE CHALLENGES, THOUGH, IN CONDUCTING COGNITION RESEARCH ARE MANY. BECAUSE MANY OF THE THERAPIES THAT ONE MIGHT DEVELOP TO IMPROVE LEARNING AND MEMORY CAN ALSO CAUSE OTHER ADVERSE EFFECTS, SO WE REALLY DO HAVE A LOT TO THINK ABOUT AND WORK WITH. BUT I DO THINK THIS TEESM TEAM OF SCIENTISTS WE BROUGHT IN ON MAY 7TH TO MEET WITH ALAN AND CHRIS HAD SOME REAL THOUGHTS ABOUT HOW WE MIGHT MOVE FORWARD FROM THE ASPECT OF NOT ONLY CONTINUING TO LOOK AT MOUSE MODELS BUT DEVELOPING LARGER ANIMAL MODELS TO GIVE US A BETTER SENSE OF WHAT THE HUMAN SITUATION MIGHT BE. THE DOWN'S SYNDROME COMMUNITY MAY NOT BE UNDERESTIMATED AT ALL WHEN IT COMES TO BEING ABLE TO MOVE AN AGENDA ITEM SUCH AS RESEARCH ITEMS AND TREATMENTS FOR FAMILIES WITH DOWN'S SYNDROME. ADVOCATES, CAREGIVERS MUST BE THE ONES WE REACH OUT TO TO ENCOURAGE TO PARTICIPATE IN CLINICAL TRIALS AS THEY BECOME AVAILABLE. IT'S ONE THING TO SAY YOU HAVE SOME NEW TARGETS READY AND RIGHT FOOT FOR TESTING BUT YOU DON'T HAVE A COHORT THAT'S LARGE ENOUGH TO BE ABLE TO ADDRESS THE ISSUES. NOW FOR THOSE OF YOU WHO KNOW YOUR STATISTICS, YOU KNOW THAT THERE ARE ABOUT 6,000 BABIES BORN EVERY YEAR WITH DOWN'S SYNDROME. THERE ARE ABOUT 250,000 INDIVIDUALS LIVING WITH DOWN'S SYNDROME IN THE U.S. BY THE AGE OF 40, MOST OF THEM HAVE DEVELOPED SOME ASPECT OF ALZHEIMER'S, AND BY THE TIME OF 60, MANY OF THEM HAVE FULL DEMENTIA. SO WE HAVE A BIG AGENDA ON OUR PLATE. BUT WE DO BELIEVE THAT WORKING WITH COUNCIL, WORKING WITH THE ADVOCACY COMMUNITY, WORKING WITH RESEARCHERS AND CLINICIANS AND THE PEOPLE WHO CAN BENEFIT MOST FROM OUR TREATMENT, AND THAT IS IS THOSE WITH DOWN'S SYNDROME, WE CAN MAKE A DIFFERENCE. ONE OF THE THINGS THAT NICHD LED WITH SEVERAL OTHER INSTITUTES AT THE NIH AS YOU CAN SEE ON THIS SLIDE, AND I PRESENTED THIS TO YOU TWO YEARS AGO, WHEN NICHD FORMED WITH THE OTHER INSTITUTES THE DOWN'S SYNDROME CONSORTIUM. THIS WAS OUR WAY OF BRINGING IN NOT ONLY THE INTERESTED SCIENTISTS BUT THE INTERESTED ADVOCACY COMMUNITY TO WORK TOGETHER. THIS GROUP HAS REALLY BEEN FANTASTIC. THEY'VE BEEN PHENOMENAL. WE'VE HAD GROUPS THAT WERE NOT TALKING TO EACH OTHER AND WERE ACTUALLY AT ADVERSE PURPOSES BUT MANY OF THEM WERE ACTUALLY OVERLAPPING IN THEIR OUTREACH EFFORTS AND REALLY NOT THE BEST OF FRIENDS, BUT WE HAVE MET WITH THESE GROUPS ABOUT TWO TO THREE TIMES A YEAR, WE TRY TO HAVE TWO TO THREE MEETINGS A YEAR. MOST OF THEM HAVE IN REALITY BEEN CONFERENCE CALLS, BUT WE HAVE LET THEM INTO THE WASHINGTON METROPOLITAN AREA AT LEAST ONCE A YEAR AND HAVE MET WITH THEM AT THEIR PROFESSIONAL MEETINGS AND SATELLITE FORUMS. SO YOU CAN SEE THE WIDE ARRAY OF CONSORTIUM MEMBERSHIPS, AND WE LOVE THE IDEA THAT THE CONSORTIUM IS INDEED MADE UP OF SCIENTISTS, RESEARCHERS, CLINICAL RESEARCHERS AS WELL AS THE BASIC SIGN SCIENTISTS. WHEN WE BEGAN, WE HAD 12, 13 ORGANIZATIONS INVOLVED NOT INCLUDING THE INSTITUTES THERE ON THE LEFT BUT WE HAVE -- WE'RE IN DEMAND. WE'VE HAD TWO ORGANIZATIONS THAT HAVE COME TO US AND ASKED TO BE MEMO BRS AND ONE IS THE INTERNATIONAL LE JEUNE FOUNDATION THAT YOU SEE UP ON THE TOP RIGHT, AND THE INTERNATIONAL MOSAIC DOWN'S SYNDROME ASSOCIATION, AND WE HAVE ADDED THEM AND NOW THEY'RE PART OF OUR CONSORTIUM. I ALSO MUST HAVE SOME TRUTH IN ADVERTISING. I'D LIKE TO WELCOME THE DEPUTY DIRECTOR OF THE NATIONAL INSTITUTE ON MINORITY HEALTH AND HEALTH DISPARITIES WHO IS HERE WITH ME TODAY, DR. JOYCE HUNTER, AND JOYCE HAS BEEN WORKING WITH ME AS I'VE TAKEN ON THESE NEW AREAS AND THESE NEW CHALLENGES, AND WE'VE AGREED THAT WE'RE GOING TO HAVE THE NATIONAL INSTITUTE ON MINORITY HEALTH AND HEALTH DISPARITIES WILL BE A PART OF THE CONSORTIUM. AND WE CANNOT THINK ABOUT ISSUES ASSOCIATED WITH DOWN'S SYNDROME AND INTELLECTUAL DEVELOPMENTAL DISABILITIES AND NOT CONSIDER THAT THE THERE ARE HUGE RACIAL AND ETHNIC DIFFERENCES IN OUTCOMES AS WELL AS IN THE DISEASE ITSELF. SO DS CONNECT, WHICH IS THE DOWN SIN DREM REGISTRY, WE DON'T SORT OF ADVERTISE IT AS A PATIENT REGISTRY BUT IT IS A PATIENT REGISTRY, WAS LAUNCHED IN SEPTEMBER OF 2013, AND I SHOWED YOU ALL ABOUT IT ALONG WITH OUR TEAM BACK DURING THAT TIME. HERE YOU'LL GET A SENSE OF WHAT WE THINK OF THE REGISTRY, WHEN WE LAUNCHED IT, WE HAD SEVERAL PIECES OF MEDIA COVERAGE, WE DID A PRESS RELEASE OURSELVES, AND I DO STRONGLY BELIEVE AND I THINK THE WHOLE OF THE INSTITUTE DOES AND THAT IS THAT WE ARE USING THIS REGISTRY AS A RESOURCE FOR VOLUNTEERS WHO WOULD WANT TO BE A PART OF THIS, BUT THE VOLUNTEERS ARE THE ONES WHO ARE GOING TO BENEFIT MOST FROM THIS. AND ONCE WE GET A COHORT IN PLACE, THE CLINICAL RESEARCHERS WHO REALLY COULD SHED MORE LIGHT ON HOW WE COULD DEVELOP MORE TREATMENTS, WOULD BE THE ONES WHO WOULD NEED TO HAVE SOME CONTACT AT SOME POINT IN TIME. SO WE DO HAVE A TO DO THAT, AND MELISSA WILL BE TALKING TO YOU SOON ABOUT THE PROFESSIONAL PORTAL THAT WE'RE DEVELOPING IN ORDER TO GIVE INVESTIGATORS AN OPPORTUNITY TO REACH THE COHORT. THE IDEA OF THE REGISTRY WAS ACTUALLY ONE THAT CAME FROM THE COMMUNITY AND THAT MAKES IT A LOT EASIER TO TRY TO PUT SOMETHING OR STAND SOMETHING LIKE THIS UP: THE RESOURCES AND TECHNOLOGIES AND TOOLS THAT WILL BE NEEDED TO ADVANCE OUR KNOWLEDGE IN THIS FIELD, SO THERE WERE TWO MEETINGS HELD IN 2010, AND IT WAS OUT OF ONE OF THESE MEETINGS THAT IT CAME FORTH THAT WE SHOULD HAVE A CONSORTIUM TO BRING THE GROUPS TOGETHER AND THE OTHER IDEA WOULD BE TO CREATE A REGISTRY. SO THIS REGISTRY WAS SUPPORTED BY THE CONSORTIUM, WHICH GIVES US A LOT OF PUBLICITY AND A LOT OF TRURS, I THINK OUT IN THE COMMUNITY, BECAUSE THE ADVOCATE ORGANIZATIONS WHO MADE UP OF THOSE WITH DOWN'S SYNDROME AND THE SCIENTISTS HAVE SUPPORTED THE REGISTRY AND THEY ARE THE ONES WHO ARE HELPING US TO DESIGN IT AND TO DEVELOP IT. WE ARE FUNDING THE REGISTRY. NICHD HAS A CONTRACT TO PATIENT CROSSROADS TO FUND THIS, WE'RE VERY PLEASED WHEN WE LAUNCHED THIS AND ALAN HAS BEEN VERY SUPPORTIVE OF ALLOWING THE INSTITUTE TO CONTINUE TO THINK ABOUT HOW WE MIGHT BE ABLE TO CONTINUE TO FUND IT IN SOME OUT YEARS. THAT HAS NOT BEEN A REAL PROBLEM FOR US BECAUSE THE ADVOCATES WANT THIS TO BE CONTINUED, AND I JUST HAVE THE BEST FEELING THAT THEY'RE NOT GOING TO LET THIS REGISTRY DIE OFF. SO WE'RE ENTHUSIASTIC ABOUT ALL OF THE POTENTIALS REGARDING MOVING FORWARD. THE REGISTRY INDEED WILL FACILITATE RESEARCH, AND WE THINK THAT TAPPING INTO THE COLLECTIVE VOICES OF ALL THOSE IMPACTED BY DOWN'S SYNDROME WILL HELP US MOVE THE RESEARCH AGENDA FORWARD. THE DOWN'S SYNDROME REGISTRY DOES SOLICIT INFORMATION FROM INDIVIDUALS. THERE'S CONTACT INFORMATION, HEALTH HISTORIES, THIS IS ALL ENTERED ONLINE IN A SECURE CONFIDENTIAL DATABASE. LISSA WILL SAY A FEW WORDS ABOUT THAT. IT'S SO DYNAMIC IN THAT REGISTRANTS CAN UPDATE AND CUSTOMIZE THEIR PROFILE AS THINGS CHANGE. WE WILL BE DEVELOPING THIS PROFESSIONAL PORTAL THAT WILL ALLOW INVESTIGATORS AND HOPEFULLY SOME OF YOU WILL WANT TO STUDY DOWN'S SYNDROME TO ACCESS SOME OF THE PATIENTS AND THE VOLUNTEERS. THERE IS A REGISTRY COORDINATOR THAT HELPS MAKE THIS WORK SO IF YOU WANT TO BE A PART OF THE REGISTRY AND YOU SIGN UP, SOMEONE LOOKS AT THE BROAD ARRAY OF PARTICIPANTS WHO HAVE SIGNED UP FOR THE REGISTRY AND WANTS TO START A CLINICAL TRIAL, THEY HAVE TO CALL THE REGISTRY COORDINATOR FIRST, THE REGISTRY COORDINATOR HAS TO GET INFORMATION FROM THE PATIENTS AND COLLECTIVELY, THIS ALLOWS US TO RECRUIT FOR THE APPROPRIATE RESEARCH STUDIES. WE DO FEEL VERY, VERY POSITIVE ABOUT THIS. NOW THIS IS THE LATEST FIGURES WE HAVE AS OF JUNE 4TH. THIS SLIDE SHOWS THE CURRENT DS CONNECT REGISTRANTS IN NORTH AMERICA. WE HAVE 1622 AS OF JUNE 4TH, 2014. NOW WE'VE MADE SOME GUESS TI MAKES AS WE THINK ABOUT THE TYPES OF STUDIES THAT WE MIGHT WANT TO SEE USE THE REGISTRY. THEY CAN RANGE ANYWHERE FROM 3,000 TO MAYBE 10,000, DEPENDING ON THE DESIGN OF THE STUDY. BUT IF YOU LOOK AT THE WAY WE'RE TRACKING NOW, WE PROBABLY -- IT WOULD TAKE US FIVE YEARS TO MAYBE GET 10,000 TO SIGN UP BUT YOU KNOW, WE'VE -- IT'S DYNAMIC AND THERE'S THE SENSE THAT THERE ARE 250,000 PEOPLE OUT THERE LIVING WITH DOWN'S SYNDROME, I THINK WE SHOULD BE ABLE TO WORK HARDER TO GET MORE PEOPLE REGISTERED ONLINE. NOW THIS WAS IN THE U.S., ACTUALLY IN NORTH AMERICA INCLUDING CANADA, BUT REGISTRANTS WORLDWIDE REPRESENTS AN ADDITIONAL 59 THAT HAVE REGISTERED OUTSIDE OF THE U.S., AND THE THING THAT'S VERY EXCITING ABOUT THIS IS THAT THE LE JEUNE FOUNDATION HAS A COHORT OF INDIVIDUALS WITH DOWN'S SYNDROME, AND WE ARE VERY, VERY HOPEFUL THAT HAVING THEM AS PART OF THE CONSORTIUM AND THEY PRETTY MUCH AGREED THAT THEIR COHORT COULD AB PART OF THE REGISTRY, AND ALSO I'VE GOTTEN SEVERAL TELEPHONE CALLS FROM OTHER EUROPEAN ENTITIES WHO HAVE AT LEAST EXPRESSED SOME INTEREST AND WORKING WITH US TO GET THEIR COHORT TO REGISTER AND SIGN UP FOR THIS IMPORTANT TOOL. IF YOU LOOK AT THE DATA ITSELF AND THE DEMOGRAPHICS, OF COURSE THESE SLIDES ARE REALLY DYNAMIC IN THE SENSE THAT INDIVIDUALS CAN GO INTO THE SLIDE, THEY CAN GO ONLINE AND FIND OUT NOT WHO BUT HOW MANY INDIVIDUALS HAVE REGISTERED IN THEIR STATE AND THEIR GEOGRAPHICAL AREA AND GIVES THEM A SENSE OF WHAT'S GOING ON IF THEY HAVE A REGIONAL DOWN'S SYNDROME ORGANIZATION, MOST OF THE STATES HAVE SOME TYPE OF DOWN'S SYNDROME ORGANIZATION, ADVOCATE ORGANIZATION SO THEY CAN ACTUALLY CONTACT THEIR ADVOCATE ORGANIZATION LEADERSHIP AND FIND OUT HOW CAN WE RECRUIT MORE PEOPLE INTO THIS REGISTRY. IF YOU LOOK AT THE DEMOGRAPHICS, IT DOES SHOW VERY SIGNIFICANTLY THAT MOST OF THE REGISTRANTS EITHER ARE PATIENTS OR INDIVIDUALS UNDER 30 YEARS OF AGE, WHICH MEANS THEY HAVE BEEN REGISTERED BY THEIR PARENTS IN MANY CIRCUMSTANCES, AND THE ONES THAT ARE OVER 30, YOU CAN SORT OF LOOK AT THE GRAPH FOR YOURSELF. BUT IT DOES HAVE A SLIGHT PREPONDERANCE OF MALES BUT WE DON'T HAVE ENOUGH INFORMATION THERE TO SUGGEST THAT THERE'S ANY TYPE OF AGEND GENDER DIFFERENCE HERE THAT IS SIGNIFICANT. SO AGAIN WE WANT TO THANK YOU AND ALL OF THE NICHD STAFF WHO HAD WORKED WITH US THROUGHOUT THIS PERIOD OF WHICH WE'VE BEEN TRYING TO STAND UP THE REGISTRY, BUT MOST IMPORTANTLY WE'VE BEEN TRYING TO GET A DOWN'S SYNDROME RESEARCH AGENDA IN PLACE. NOT JUST FOR NICHD, BUT FOR ALL OF NIH, AND WORKING WITH THE AGENT INSTITUTE AND THE NATIONAL INSTITUTE ON NEUROLOGICAL DISEASES AND STROKE, THE TWO OTHER MAJOR PARTNERS WORKING IN THE AREAS OF COGNITION AND LEARNING. WE THINK THAT WE WILL BE ABLE TO COLLABORATE A LOT MORE EFFECTIVELY WITH THEM AS A RESULT OF THIS REGISTRY AND THIS CONSORTIUM AS WELL. MELISSA, YOU'RE ON. AND I MUST -- I WANT TO JUST ADD, WE COULD NOT HAVE DONE THIS AT NICHD WITHOUT MELISSA AND HER TEAM IN THE DEVELOPMENTAL DISABILITIES BRANCH, SO I WANT TO SAY THANK YOU TO MELISSA FOR ALLOWING US TO MOVE FORWARD WITH THIS AND TO HAVE HAD THE IMPACT WE'VE HAD SO FAR. [APPLAUSE] >> THANK YOU, YVONNE, FOR THAT WONDERFUL INTRODUCTION. I WANTED TO POINT OUT ON THIS PRIOR SLIDE THAT ALL OF THESE DATA, ALL OF THE DATA POINTS, ALL THE RESPONSES TO ALL OF THE QUESTIONS ARE AVAILABLE TO THE REGISTRANTS ONCE THEY'VE ENTERED THEIR OWN INFORMATION IN. SO THEY HAVE IMMEDIATE FEEDBACK AND CAN LOOK AT THE RESULTS AND SEE WHAT INFORMATION IS BEING COLLECTED AND HOW THEIR LOVED ONE WITH DOWN'S SYNDROME COMPARES TO THE REST OF THE REGISTERED PARTICIPANTS. IT SEEMS LIKE ON A WEEKLY BASIS WE'RE HEARING ABOUT A SECURITY BREACH, WHETHER AT OUR FAVORITE STORES OR GOVERNMENT ENTITIES. SO THIS IS A MAJOR CONCERN ANY TIME PEOPLE ARE SHARING PERSONAL INFORMATION VIA THE INTERNET. SO WE'VE WORKED REALLY HARD TO MAKE SURE THAT THIS MEETS THE MOST STRINGENT DATA SECURITY REQUIREMENTS TO ALLOW IT TO PROTECT THAT PERSONALLY IDENTIFIABLE INFORMATION. THERE ARE AROUND 250 SECURITY CONTROLS THAT ARE CHECKED REGULARLY. EVERY YEAR A THIRD OF THOSE CONTROLS ARE ANALYZED AND ASSESSED BY AN INDEPENDENT OUTSIDE ASSESSOR, AND THIS IS A VERY LENGTHY AND LABOR INTENSIVE PROCESS. ALL OF THE INFORMATION IS ENCRYPTED AND WE HAVE A LOT OF SECURITIES BUILT INTO THE PASSWORD REQUIREMENTS. I KNOW IT'S A PAIN TO HAVE TO REMEMBER ALL OF THOSE ELEMENTS TO YOUR PASSWORDS, BUT THESE DAYS THAT'S REALLY ONE OF THE BEST WAYS TO ENSURE THAT THERE'S SAFETY AND PROTECTION OF IMPORTANT INFORMATION. WE ALSO REQUIRE THAT PASSWORDS HAVE TO BE CHANGED ON A REGULAR BASIS AND OF COURSE WE TRY NOT TO COLLECT INFORMATION THAT WOULD BE DEEMED TOO PRIVATE, SUCH AS SOCIAL SECURITY INFORMATION OR BANK ACCOUNT INFORMATION. SO WE THINK WE'VE BEEN ABLE TO MEET THE STANDARD AND THIS IS A MODERATE LEVEL OF SECURITY, FOR THOSE OF WHO YOU ARE VERSED IN THAT LANGUAGE. THE PORTAL FOR PROFESSIONALS IS VERY ACTIVELY UNDER DEVELOPMENT AND OUR GOAL IS OH TO LAUNCH IT THIS SUMMER. AND THIS WOULD BE A LINK THAT WOULD BE AVAILABLE ON THE HOME PAGE THAT WOULD ALLOW PROFESSIONALS TO ACTUALLY HAVE VERY SIM ACCESS TO THE INFORMATION THAT THE PARTICIPANTS HAVE ACCESS TO. AS YVONNE MENTIONED, THERE'S NO DIRECT ACCESS TO THE REGISTRY PARTICIPANTS BY A PROFESSIONAL WHO MIGHT CHOOSE TO DEVELOP AN ACCOUNT AND REGISTER. AND IN FACT THE REGISTRY COORDINATORS, THOSE OF US, ONLY A HANDFUL OF US REALLY WHO HAVE ACCESS TO THE INFORMATION WILL CONTACT THOSE ELIGIBLE FAMILIES ABOUT PARTICULAR STUDIES THAT THEIR INDIVIDUAL LOVED ONE WITH DOWN'S SYNDROME MAY QUALIFY FOR, AND THEY WILL BE INVITED VIA AN EMAIL REQUEST TO THEN PARTICIPATE IF THEY SO CHOOSE BY CONTACTING THAT INVESTIGATOR DIRECTLY. WE REALIZED PRETTY EARLY ON IN TRYING TO DEVELOP AND DESIGN THE PROFESSIONAL PORTAL THAT IT WASN'T A ONE SIZE FITS ALL TYPE OF ENDEAVOR. AND THAT REALLY WE NEEDED AT LEAST THREE DIFFERENT TEARS OF ACCESS. WE DECIDED THAT THRIE WAS A GOOD NUMBER, WE COULD HAVE GONE MORE BUT IT REALLY MADE SENSE TO KEEP IT AS SIMPLE AS POSSIBLE. LEVEL ONE IS REALLY FOR THOSE PROFESSIONALS, CLINICIANS, RESEARCHERS, ADVOCACY GROUP MEMBERS, REALLY ANY MEMBER OF THE PUBLIC WHO'S INTERESTED IN DOWN'S SYNDROME AND INTERESTED IN LOOKING AT THE DATA. AT THE MOST BASIC LEVEL, THIS INDIVIDUAL WOULD BE ABLE TO LOOK AT THE SAME DATA THAT THE INDIVIDUAL PARTICIPANTS CAN LOOK AT, AND THEY CAN DO SOME -- SOMEWHAT LITTLE MORE DETAILED SEARCHES UNDER THE DATA FIELDS TO BE ABLE TO ANSWER SOME SPECIFIC QUESTIONS THEY MIGHT HAVE. LEVEL 2 ACCESS WOULD BE A LITTLE MORE DETAILED LEVEL OF ACCESS THAT WOULD REQUIRE MORE COMPLEX SEARCHES OR POTENTIALLY A ROW BY ROW ACCESS TO SOME OF THE DATA, BUT KEEP IN MIND IN BOTH OF THESE SITUATIONS, IT'S STILL AGGREGATE OR DE-IDENTIFIED DATA. THEY NEVER ARE HAVE ACCESS TO THAT PERSONAL IDENTIFYING INFORMATION. THEN FINALLY FOR THOSE INVESTIGATORS WHO WANT TO ACTUALLY ACTIVELY RECRUIT FOR THEIR STUDIES, OR WHO WANT TO HAVE THEIR STUDY POSTED ON THE REGISTRY, THEY WOULD NEED ACCESS LEVEL 3 AND WE WOULD REQUIRE MEETING CERTAIN CRITERIA, SUCH AS HAVING AN APPROVED IRB IN PLACE, HAVING APPROPRIATE INFORMED CONSENT FORMS, ET CETERA. SO AS WE DEVELOP THE PROFESSIONAL PORTAL, WE ALSO HAVE A NUMBER OF OTHER ENHANCEMENTS THAT ARE UNDER DEVELOPMENT. CURRENTLY WE HAVE EIGHT DIFFERENT MODULES AS PART OF THE SURVEY, AND THAT MAY SOUND LIKE A LOT BUT IT'S REALLY DESIGNED TO ALLOW THIS TO BE DONE IN SMALL INCREMENTS. A LOT OF PEOPLE DON'T HAVE A LOT OF TIME TO SIT DOWN AND FILL OUT A VERY LENGTHY HEALTH QUESTIONNAIRE, SO WE'VE KEPT THE INITIAL HEALTH QUESTIONNAIRE TO 50 QUESTIONS, WHICH CAN BE DONE IN ABOUT 10, 15 MINUTES MAX, AND THEN WE HAVE SOME ADDITIONAL SURVEY MODULES DEPENDING ON PARTICULAR AREAS SUCH AS THE ENDOCRINE SYSTEM OR THE HEART SYSTEM THAT IF AN INDIVIDUAL PARTICIPANT WITH DOWN'S SYNDROME APPLIES FOR OR ACTUALLY QUALIFIES FOR, THEN THEY ARE ALLOWED TO FILL OUT THESE ADDITIONAL SURVEYS, MODULES, THAT HAVE ABOUT 10 QUESTIONS MAX ON THEM. SO WE'RSO WE'RE DEVELOPING SOME ADDITIONAL SURVEY MODELS FOR LEUKEMIA, HIGH RISK FOR THE DOWN'S SYNDROME POPULATION, FEMALE HEALTH, WE DIDN'T REALIZE WE DON'T UNDERSTAND A LOT ABOUT FEMALES WITH DOWN'S SYNDROME PARTICULARLY AS THEY AGE. WE ALSO WANT TO KNOW MORE ABOUT THE CAUSES OF DEATH FOR INDIVIDUALS WITH DOWN'S SYNDROME, BECAUSE THAT'S ALSO AN AREA THAT'S RELATIVELY UNDEREXPLORED. AND FINALLY A GLOSSARY THAT WILL HELP INDIVIDUALS UNDERSTAND SOME OF THE MEDICAL TERM NOTHING WHICH WE'VE TRIED TO SIMPLIFY AS MUCH AS POSSIBLE IN THE CONTENT OF THE MODULES. AS WE'VE ALREADY TALKED ABOUT IN THE DIRECTOR'S REPORT, OBVIOUSLY A VERY LARGE DEMOGRAPHIC IN THE U.S. IS A SPANISH LANGUAGE SPEAKING POPULATION, SO WE THINK IT'S VERY IMPORTANT TO CONVERT THE REGISTRY, TRANSLATE IT INTO SPANISH AND HAVE THAT AVAILABLE, AND OUR GOAL IS TO ACTUALLY LAUNCH THAT LATER IN THIS CALENDAR YEAR. WE'RE ALSO PLANNING TO EXPAND SOME OF THE RESOURCES, LINK INTO EXISTING RESOURCES SO WE DON'T WANT TO REINVENT THE WHEEL, BUT FOR EXAMPLE THE AMERICAN ACADEMY OF PEDIATRIC HAS SOME VERY, VERY HELPFUL INFORMATION FOR FAMILIES THAT IS AGE-APPROPRIATE, AND HAVING LINKAGES TO THAT INFORMATION AT FINGERTIPS OF INDIVIDUAL PARTICIPANTS MAKES A LOT OF SENSE. AND THEN OF COURSE BEING ABLE TO CUSTOMIZE THE FUNCTIONALITY SO IT IS USEFUL TO THOSE FAMILIES WHO ARE REGISTERED. FINALLY, THERE'S A GREAT DEAL OF INTEREST IN CREATING LINKAGES BETWEEN PATIENT REGISTRIES AND BIOSPECIMEN REPOSITORIES. THERE ARE A LOT OF CHALLENGES IN TRYING TO CREATE SUCH LINKAGES, BUT ONE OF THE WAYS IN WHICH WE THINK THIS CAN BE DONE IS BY HAVING SOME SORT OF A GLOBAL UNIQUE IDENTIFIER OR GUID THAT ACTUALLY LINKS THE DATA FROM THAT INDIVIDUAL THAT'S PART OF A CONTACT REGISTRY WITH THEIR BIOSPECIMEN THAT MAY BE LOCATED AT A COMPLETELY DIFFERENT LOCATION. THIS WAY YOU PRESERVE CONFIDENTIALITY BUT YOU STILL CREATE LINKAGES SO THAT THOSE SPECIMENS CAN BE LINKED TO CLINICAL INFORMATION MEANINGFUL FOR THAT INDIVIDUAL. IN OUR VARIOUS CONVERSATIONS WITH FAMILY MEMBERS IN THE DOWN'S SYNDROME COMMUNITY, WE DO THINK IT'S VERY IMPORTANT TO BE ABLE TO GIVE BACK TO THEM AND SO ONE OF THE GOALS IS TO REALLY CREATE RESOURCES ON THE REGISTRY THAT ARE OF VALUE TO THEM. ONE OF THE AREAS THAT THEY'VE EXPRESSED A GREAT DEAL OF INTEREST IN AND WE COMPLETELY APPRECIATE IS THE ABILITY TO HAVE LISTS OF HEALTHCARE PROVIDERS AVAILABLE, SO THIS WAY YOU CAN SEARCH, IF YOU MOVE TO A NEW COMMUNITY, YOU CAN ACTUALLY FIND OUT WHO'S TREATING INDIVIDUALS WITH DOWN'S SYNDROME BASED ON WHAT OTHER MEMO BRS AND OTHER REGISTRANTS HAVE ADDED WE'RE HOPING TO UPDATE THE DOWN'S SYNDROME GO CHARTS. CAN YOU ALSO PRINT OUT YOUR SURVEY RESPONSES IN A VERY CONCISE AND PDF FORMAT AND HAND THAT TO YOUR HEALTHCARE PROVIDER TO GIVE THEM A SNAPSHOT ABOUT YOUR CHILD WITH DOWN'S SYNDROME. AND OF COURSE WE WANT TO USE IT AS A FORM TO UNDERSTAND THE HEALTHCARE NEEDS OF INDIVIDUALS WITH DOWN'S SYNDROME. SO IN CLOSING, I WANTED TO JUST MENTION SOME OF OUR GOALS FOR DOWN'S SYNDROME RESEARCH. OBVIOUSLY WE WANT TO EXPAND THE DOWN'S SYNDROME CONNECT REGISTRY AND WE'D LIKE TO SEE THE NEEDLE ON THE GAUGE HIT THE 10,000 MARK AND BEYOND. WE PLAN TO LAUNCH THE PROFESSIONAL PORTAL, AND ONE THING WE HAVEN'T MENTIONED IS UPDATING THE DOWN'S SYNDROME RESEARCH PLAN THAT LISA KAY SER AND MARY LOU HAVE BEEN VERY INVOLVED IN AND IT'S REALLY ALMOST RE CA READY FOR FINAL PUBLICATION SO WE'RE VERY EXCITED ABOUT THIS, BECAUSE THIS IS GOING TO INFORM THE RESEARCH PRIORITIES IN THE FUTURE. AND THEN WE WANT TO INVOLVE MORE FAMILIES, CLINICIANS AND SCIENTISTS IN DOWN'S SYNDROME RESEARCH AND USE THIS RESEARCH TO INFORM THEM ABOUT THE LATEST RESEARCH SUPPORTED FACTS. AND ULTIMATELY, THE GOAL IS TO HELP ALL INDIVIDUALS WITH DOWN'S SYNDROME REACH THEIR FULL POTENTIAL. SO THESE ARE SOME OF THE TOOLS THAT WE'RE USING TO GET THE WORD OUT, WE WANT TO THANK OUR COMMUNICATIONS TEAM FOR PROVIDING SOME WONDERFUL INFO GRAPHICS AND OTHER USEFUL AND REALLY VIBRANT IMAGES THAT I THINK ARE VERY POSITIVE AROUND THE DOWN'S SYNDROME COMMUNITY, AND FINALLY ACKNOWLEDGE THE INVOLVEMENT OF ALL OF THE INDIVIDUALS WITHOUT WHOM THIS WOULD NOT HAVE BEEN POSSIBLE, AND AT THE VERY BOTTOM, YOU MAY NOT SEE IT BECAUSE IT'S CUT OFF, BUT WITHOUT THE COMMITMENT AND DETERMINATION OF DR. MADDOX, NOT TO MENTION HER PASSION FOR THE DOWN'S SYNDROME COMMUNITY, THIS WOULD NEVER HAVE COME INTO FRUITION. SO THANK YOU, YVONNE. [APPLAUSE] >> THANK YOU VERY MUCH, YVONNE AND MELISSA FOR THAT UPDATE. THEY WILL BE BOTH AVAILABLE DURING THE BREAK IF FOLKS WANT TO COLLAR THEM ABOUT THIS AT ALL. I WANT TO MAKE SURE WE GET IN OUR LAST BUT VERY IMPORTANT PART OF OPEN SESSION, DR. MADDOX, DON'T YOU LEAVE. [LAUGHTER] I PROMISED -- WE'RE GOING TO HAVE SOME PEOPLE SPEAK AND I PROMISED THAT THEY WOULD BE SHORT SO THAT EVERYONE WILL GET TO LUNCH IN TIME BUT LTS IT'S THE ONLY WAY THAT YVONNE WOULD AGREE TO DO THIS. WE'RE GOING TO SPEND THE NEXT FEW MINUTES, MAYBE WE CAN WAIT WITH ALL THAT, PLEASE? THANKS. THANK YOU. WHAT WE'RE GOING TO DO IS TO HAVE A FEW OF US COMMENT ABOUT YVONNE'S TENURE WITH NICHD. WE'RE GOING TO SORT OF BOOK END THIS SO THAT DUANE IS THE GHOST OF CHRISTMASES PAST, AS THE TWO NICHD DIRECTORS WHO HAVE HAD THE INCREDIBLE PLEASURE OF WORKING WITH YVONNE, WE'RE BOTH GOING TO MAKE BRIEF COMMENTS, BUT THEN WE'RE ALSO GOING TO, BETWEEN OUR COMMENTS, HAVE RENE JENKINS REPRESENTING COUNCIL GIVE SOME THOUGHTS, AND THEN DEBBIE HANKIN REPRESENTING STAFF SAY SOME WORDS ABOUT THE PLEASURE OF WORKING WITH YVONNE OVER THE YEARS. SO DUANE, YOU GET TO HAVE THE FIRST WORD ABOUT YVONNE. >> OKAY. I HAD THE GREAT PLEASURE OF RECRUITING YVONNE TO THE INSTITUTE YEARS AGO, AND THAT'S ONE OF THE BEST THINGS WE EVER DID IN TERMS OF PERSONNEL. SHE THAT BE A DELIGHT TO WORK WITH AND A REAL TREASURE FOR ALL OF US THAT HAVE SEEN NICHD GROW IN APPROPRIATE WAYS, BRINGING GOOD PEOPLE IN AND JUST DOING A SUPER JOB. YVONNE IS IS IN EVERY WAY A MOST VALUABLE PLAYER AND AN ALL-STAR. SHE HAS AN INCREDIBLE SKILLS AND ABILITIES THAT MAKE HER VALUABLE FOR ANY TEAM, AND I'M GLAD SHE PICKED NICHD EATION TEA'S TEAM TO PLAY ON. SHE HAD REAL VALUABLE TRAINING AS YOU HAVE TO HAVE TO PLAY IN THE MAJOR LEAGUES BEFORE SHE CAME. SHE GOT HER PH.D. IN THE AREAS OF SCIENCE IN RELATIONSHIP TO NICHD, SO SHE WAS TAILOR-MADE AND PREPARED FOR MANY OF THE SCIENTIFIC ISSUES THAT SHE HAD TO DEAL WITH HERE. YVONNE IS A REMARKABLE PEOPLE SKILLS PERSON. SHE COULD MAKE FOLKS WITH A PROPOSAL THAT SHE SAID NO TO THINK THAT SHE SAID YES. [LAUGHTER] AND IT WAS OFTEN THE CASE THAT SHE MADE SUGGESTIONS THAT TRNED IT FROTURNEDIT FROM A NO TO A YES THAT SHE HAD THAT ABILITY TO DO. BUT SHE ALSO IS A PERSON WITH AMAZING HIGH ENERGY, AND INFECTIOUS ENTHUSIASM, WHO TRANSFERRED HER SKILLS AS A COLLEGE FOOTBALL CHEERLEADER TO AN NICHD CHEERLEADER. SHE WA IS A PERSON WITH A FULL CALENDAR OF WORK AGENDA ITEMS, BUT WHO ALWAYS FOUND TIME FOR CHURCH AND FAMILY, WHICH OFTEN MEANT COMMUTING TO THE NIH FROM PRINCE GEORGE'S COUNTY BY WAY OF RICHMOND. SHE WAS A LOYAL COLLEAGUE AND STILL REMAINS THAT, WHO STAYED AT THE NICHD WHICH SHE HAD A PARTICULAR ATTACHMENT TO, IN SPITE OF MANY OTHER PORTIONS POSITIONS THAT SHE WAS OFFERED OVER THE YEARS. SHE'S A PERSON WHO IS NOW LEAVING AT THE TOP OF HER GAME, AND HAS MUCH YET TO CONTRIBUTE. SO WE WISH HER WELL, WE THANK HER FOR ALL THAT SHE HAS DONE FOR US AS AN ORGANIZATION AND INDIVIDUALLY, FOR THE PLEASURE OF WORKING WITH HER EVERY DAY, THAT WE ALL ENJOYED. YVONNE, WE THANK YOU, WE WISH YOU ALL THE BEST. [APPLAUSE] >> THANK YOU, DUANE. RENE, YOU'RE NEXT. >> SO FIRST OF ALL, I'M HONORED TO BE SELECTED TO MAKE A COMMENT. I GUESS I'VE KNOWN YVONNE IN MANY DIFFERENT CONTEXTS, BUT CERTAINLY MOST RECENTLY ON COUNCIL. AND I THOUGHT ABOUT OUR RELATIONSHIP TO YVONNE ON COUNCIL AND IT'S LIKE, WE COME INTO YOUR PROFESSIONAL HOME AND YOU'RE LIKE THE HOSTESS, OKAY? IN TERMS OF HOW YOU TREAT US. AND YOU KNOW, WHAT ARE THE CHARACTERISTICS OF A REALLY SUCCESSFUL HOSTESS? WELL, I FOUND THEM ON GOOGLE, THE MOST INFORMATIONAL SOURCE THAT WE ALL HAVE. THE FIRST ONE THEY TALK ABOUT IS GOOD CUSTOMER SERVICE SKILLS. OKAY? AND YOU WELCOME US, YOU SMILE, YOU GREET US WELL, YOU TAKE US TO GOOD PLACES TO EAT AFTER YOU'VE TRIED THEM OUT, AND MOST OF ALL, WE WENT ON A TOUR, REMEMBER, WE WENT OVER TO PORTER AND WE WERE EXHAUSTED. AND YVONNE BROUGHT US WATER AND CHOCOLATE. SO IS THAT CUSTOMER SERVICE OR NOT? OKAY? SECOND THING IS GOOD DECISION-MAKING SKILLS. AND THEY TALK ABOUT HOW IMPORTANT GOOD DECISION-MAKING SKILLS ARE UNDER STRESSFUL CONDITIONS AND ENVIRONMENTS, OKAY? AND I DON'T THINK THERE'S MUCH MORE STRESS THAN WHEN SOMEONE ELSE ALREADY POINTED OUT THAT ONE, WE HAVE TOUGH DECISIONS TO MAKE AROUND FUNDING, SINCE FUNDING GOT CUT, AND THEN WE HAVE TOUGH DECISION-MAKING WHEN YOU DIDN'T COME TO WORK, NOW THEY'VE GOT HOUSING NOT ONLY THAT WE DIDN'T GET FUNDED, WE GOT HOUSING TOO, SO UNDER ALL THOSE CONDITIONS, YOU STILL EXCEL. THEN THERE ARE GOOD COMMUNICATION SKILLS, AND I THINK YOU CLEARLY COMMUNICATE YOUR COMMITMENT TO WORK FOR THE MISSION OF NICHD, AND YOU KEEP THAT MESSAGE UP FRONT SO THAT WE CAN ALL BE AWARE OF THAT AS WE REVIEW AND DISCUSS THESE GRANTS. THEN THERE'S GOOD ORGANIZATIONAL SKILLS, AND THAT IS LIKE RUNNING THE MEETING THAT YOU VERY OFTEN WERE IN CHARGE OF RUNNING. SMOOTH OPERATOR COMES INTO OUR MINDS, OKAY? CERTAINLY SMOOTH OPERATIONAL SKILLS. TWO THINGS THEY DIDN'T MENTION THAT I THINK YOU ALSO HAVE, WHICH IS ONE DUANE REFERRED TO, ENERGY. YOU HAVE MORE ENERGY THAN ALL OF US PUT TOGETHER. I MEAN, IT'S JUST INCREDIBLE. I DON'T KNOW WHEN YOU SLEEP OR HOW YOU REV DOWN LONG ENOUGH TO GO TO SLEEP. AND THEN THE OTHER PART IS WHEN YOU GO SOMEWHERE AND YOU'VE GOT A LOVELY HOUSE, HOW DO YOU KNOW, BECAUSE THEY DRESS FOR YOU, RIGHT? AND YOU ARE SO STYLISH, ALWAYS, OKAY? SO CLEARLY THAT WAS ONE THAT THEY DIDN'T PICK UP ON. AND THEN AS I COME TO A CLOSE, THE RETIREMENT PIECE, YOU KNOW, MANY OF YOU HAVE SEEN THE PREDENGS COMMERCIAL WHERE THEY SAY, YOU KNOW, WHAT WOULD YOU DO IF YOU COULD GET PAID TO DO WHATEVER YOU WANTED TO DO? AND THE WHOLE IDEA IS IN RETIREMENT, YOU PAY YOURSELF, AND YOU GET TO DO WHAT YOU WANT TO DO. PEOPLE PUT IN THERE PIE MAKER, GARDENER, I WANT TO PLAY MUSIC. NOBODY PUTS IN THERE I WANT TO TAKE OVER A NEW INSTITUTE. OKAY? NOBODY PUT THAT IN THERE, OKAY? SO IT'S HARD TO SAY WE'LL MISS YOU BECAUSE WE KNOW YOU'RE JUST GOING TO GO GET ANOTHER SET OF CUSTOMERS, OKAY? AND WE WISH YOU WELL WITH THOSE NEW CUSTOMERS. THANK YOU SO MUCH. [APPLAUSE] >> AND NEXT -- YOU CAN SAY ONE MORE THING BEFORE DEBBIE HANKIN. >> I'M CLEANING OUT MY OFFICE, THIS IS A DOOR HANGER. 1970-SOMETHING? [INAUDIBLE] [LAUGHTER] >> AN ARTIFACT. DEBBIE, YOU'RE NEXT. >> THIS IS GOING TO AB LITTLE BIT DIFFERENT. WE'RE GOING TO HAVE A LITTLE SCIENTIFIC BENT TO OUR APPRECIATION COMMENTS FOR YVONNE. LAST MONTH ALAN EMAILED ME AND ASKED WHETHER I'D BE WILLING TO SPEAK FOR A FEW MINUTES AND REPRESENT STAFF IN THIS TRIBUTE TO YOU. HE WROTE AND I QUOTE, YOUR TASK WOULD SIMPLY BE TO REFLECT UPON WHAT YVONNE HAS MEANT TO NICHD AND OUR MISSION FROM STAFF'S VIEWPOINT. WOULD YOU BE WILLING TO TAKE THIS ON? I REPLIED THANK YOU FOR THINKING OF ME, IT IS QUITE THE HONOR AND OF COURSE I ACCEPT, BUT THE TRUTH IS, THERE'S ABSOLUTELY NOTHING SIMPLE ABOUT YOUR REQUEST. TO BE INCLUSIVE, A CORE VALUE OF YVONNES, I WANTED TO ENSURE THAT I HAD REAL INPUT FROM EXTRAMURAL STAFF, ALL OF EXTRAMURAL STAFF, AND SO THIS BEING THE NIH, I TOOK A SCIENTIFIC APPROACH TO ALAN'S REQUEST, AND BEGAN COLLECTING DATA FROM EACH EXTRAMURAL BRANCH OFFICE AND DIVISION. EACH WAS ASKED TO SURVEY THE MEMBERS OF THEIR UNIT AND PROVIDE ME WITH TWO PIECES OF INFORMATION. THE FIRST WERE WORDS THEY WOULD USE TO DESCRIBE YVONNE, AND THE SECOND WAS THE AREAS OF SCIENCE AND SCIENTIFIC ADMINISTRATION WHERE SHE HAS HAD THE MOST IMPACT AT NICHD. IN THE NEXT FEW MINUTES, I'LL SHARE THESE RESULTS WITH YOU. I'VE LEARNED THAT IN ANY PRESENTATION AN AUDIENCE CAN ONLY TAKE HOME THREE MESSAGES. YVONNE, THE FIRST MESSAGE FROM STAFF IS WE LOVE YOU AS A PERSON, AS A FRIEND, AND AS A COLLEAGUE. AND THIS SUMMARIZES WHY. 103 DESCRIPTORS WERE SUBMITTED BY STAFF. AND WERE WEIGHTED BASED ON THE NUMBER OF RECURRENCES -- NOT EXACTLY CORRECT. BUT HERE'S A PICTORIAL DESCRIPTION OF THE TOP 30 OF THESE SCORES. THE THREE MOST FREQUENTLY MENTIONED WERE MENTOR, DEDICATED AND CARING. THE OTHER 27 ON THE SLIDE RECEIVED MULTIPLE MENTIONS. OTHERS OF INTEREST THAT WERE MENTIONED LESS FREQUENTLY, IE, ONLY ONE HIT, BUT ARE NO LESS ACCURATE WERE ENERGIZER BUNNY, THE ELEGANCE AMBASSADOR, AND WILLING DERVISH ANS ASIDE, NICHD WAS SCHEDULED TO HOLD ITS FIRST EVER BOOK CLUB DISCUSSION NEXT WEEK ON THE REMARKABLE LIFE OF RUTH COMMISSIONERS TEEN. WHILE THE DISCUSSION WILL HAVE TO BE POSTPONED BECAUSE OF ISSUES WITH OUR BUILDING THAT HAVE BEEN DISCUSSED, * THOSE OF US WHO ACTUALLY FINISHED THE BOOK IN TIME FOR THE BOOK CLUB MEETING WILL BE ABLE TO DRAW MANY PARALLELS BETWEEN RUTH'S STRENGTHS AND THOSE THAT WE AS AN INSTITUTE COMPILED ABOUT HER ., YVONNE. IT IS CLEAR THAT NOT ONLY DID YVONNE LEARN WELL FROM HER MENTOR, BUT LIKE HER MENTOR, SHE IS PASSIONATE ABOUT PASSING ON ALL THAT SHE HAS LEARNED TO THE NEXT GENERATION. ALTHOUGH I DOUBT THAT THE DESCRIB TORE ENERGIZER BUNNY OR ROLLING DERVISH WOULD HAVE BEEN WELL RECEIVED BY DR. KIRSCH STEEN. THE SECOND TAKE HOME MESSAGE IS THAT WE APPRECIATE YOU ALL UH-UH HAVE ACCOMPLISHED ABOUT THE SCIENCE AND ALL ABOUT IT THAT WE HAVE ACCOMPLISHED HERE AT NICHD. YVONNE HAS TRULY BEEN A VISIONARY LEADER TO CARRY OUT THE MISSION. SHE HAS PLAYED A CRUCIAL ROLE IN PROMOTING SCIENTIFIC AGENDAS IN MANY, MANY AREAS OF RESEARCH OF IMPORTANCE. IT WAS DIFFICULT TO SUMMARIZE THE RESULTS BUT THIS IS WHAT WE HAVE, AND I WILL TRY TO PUT IT INTO WORDS. 52 UNIQUE DESCRIPTORS OF SCIENCE WERE SUBMITTED. BASED ON MY ANALYSIS, DOWN'S SYNDROME, HEALTH DISPARITIES AND WOMEN'S HEALTH WERE FRONTRUNNERS. OTHER AREAS RELATED TO THE HEALTH AND WELL-BEING OF MOTHERS, CHILDREN, BIRTH DEFECTS AND REHABILITATION WERE ALSO WELL REPRESENTED. A SPECIAL NOTE IS THE CRITICAL ROLE YVONNE PLAYED IN ENSURING THAT THE ADMINISTRATIVE SIDE OF SCIENTIFIC ADMINISTRATOR WAS NOT SHORTCHANGED. SHE RECOGNIZED THAT TO BE GOOD STEWARDS OF THE SCIENTIFIC ENTERPRISE, WE HAD TO BE KNOWLEDGEABLE NOT ONLY IN OUR OWN SCIENTIFIC AREAS BUT IN SCIENCE ADMINISTRATION AND POLICY. SHE WAS CONSTANTLY PUSHING US TO BROADEN OURSELVES BY TAKING TRAINING, PROFESSIONAL DEVELOPMENT CLASSES AND SPENDING TIME AT OTHER FEDERAL COMPONENTS TO BECOME ALL THAT WE COULD BE AND NEVER FOR GETTING TO SHARE THAT WHAT WE LEARN WITH THOSE WHO FOLLOW US. YVONNE, THE THIRD AND FINAL MESSAGE IS THAT WE WILL MISS YOU. WE KNOW THAT THE NEW POSITION YOU HAVE TAKEN ON IS CLOSE TO YOUR HEART, AND IS SOMETHING THAT YOU MUST DO. THAT SAID, WE WILL MISS SEEING YOU ON A REGULAR BASIS, BUT REST ASSURE THAT ALL YOU HAVE STARTED HERE AND WORKED SO HARD TO MAKE HAPPEN WILL CONTINUE. YOU HAVE TRAINED US ALL WELL. I HAVE TO GIVE TWO LITTLE SPECIAL THANKS TO JESSICA WU, WHO HELPED PUT TOGETHER THOSE WONDERFUL SLIDES AND MY DAUGHTER SAMARA, WHO ALSO DID THE POWERPOINT FOR THE OTHER SLIDE BECAUSE I COULDN'T DO THAT, I JUST GOT A TEXT, SHE GOT A JOB, SHE GRADUATED COLLEGE AND I THINK SHE GOT A JOB. SO THANKS TO ALL OF YOU EXTRAMURAL STAFF. [APPLAUSE] >> UNSURPRISINGLY I THINK ALL THREE OF OUR SPEAKERS HAVE DONE A WONDERFUL JOB DESCRIBING YVONNE AND HOW IMPORTANT SHE'S BEEN TO ALL OF US. I'M NOT SURE THERE'S A WHOLE LOT TO ADD, AS A MATTER OF FACT, I'M GOING TO SOMEBODY TRACT ONE THING. RENE I NEED TO CORRECT ONE THING YOU SAID. YOU LEFT THE IMPRESSION THAT YVONNE SLEEPS. WE ACTUALLY HAVE NO DATA TO SUPPORT THAT HYPOTHESIS. AND SOME OF US BELIEVE IT'S IMPOSSIBLE BECAUSE THERE'S NO WAY SHE COULD ACCOMPLISH WHAT SHE DOES EVERY DAY IF SHE TOOK TIME OFF TO SLEEP. SO WE'LL HAVE TO CHECK WITH CHARLES, BUT I PERSONALLY DOUBT THE VERY IDEA THAT SHE DOES THAT. I GUESS AGAIN THE IDEA THAT YOU NEED TO GIVE NO MORE THAN THREE POINTS BECAUSE PEOPLE WON'T OBSERVE MORE THAN THAT, SO I'VE TRIED TO BREAK DOWN TH WHAT I THINK ABOUT YVONNE THREE THINGS, ONE OF SER HAN IMAGINE AMOUNT SKILLS, HER SECOND AND FRIEND AND COUNSELOR AND THIRD PEOPLE SKILLS, ALL OF WHICH HAVE BEEN TALKED ABOUT. IN TERMS OF HER MANAGEMENT SKILLS, SOME OF YOU ARE AWARE THAT FOR INSTANCE YVONNE WAS REALLY THE LAST DEPUTY DIRECTOR ANY PLACE AT NIH TO REALLY RUN THE EXTRAMURAL PROGRAM AND BE DEPUTY DIRECTOR OF THE WHOLE INSTITUTE AT THE SAME TIME. AND SHE DID IT INCREDIBLY EFFECTIVELY. THOSE ARE TWO MORE THAN FULL TIME JOBS, AND THE FACT THAT SHE PULLED THAT OFF WITH THE APPARENT EASE WITH WHICH SHE DID IT BESIDES BEING SORT OF A MYSTERY IN SOME KIND OF METAPHYSICAL PHENOMENON JUST SAYS SOMETHING ABOUT NOT ONLY HOW HARD SHE WORKED, HOW BRIGHT SHE IS, HOW CREATIVE SHE WAS, BUT JUST HOW MUCH SHE CARED ABOUT WHAT WE DO, WHICH SORT OF LEADS INTO MY THOUGHT ABOUT HER AS FRIEND AND COUNSELOR. I HAVE TO TELL YOU, AMONG MY MANY DELIGHTS OF COMING TO NICHD HAS BEEN THE FRIENDSHIP AND RELATIONSHIP WITH YVONNE WHO I KNEW BEFORE, I WAS A DEPUTY DIRECTOR AT ANOTHER INSTITUTE BEFORE I CAME HERE, SO I HAVE A PARTICULAR APPRECIATION FOR WHAT THAT ROLE IS LIKE AND HOW CHALLENGING IT IS, AND I HAD DONE THINGS WITH YVONNE TOGETHER BEFORE, BUT I HAD ONLY AN INKLING OF WHAT IT WAS LIKE TO WORK TOGETHER WITH HER AND HOW REWARDING IT IS, AND THE MOST IMPORTANT THING SHE DID FOR ME AS A DIRECTOR BESIDES RUNNING THE PLACE AND EVERYTHING ELSE WAS THAT SHE WAS ALWAYS -- COULD ALWAYS BE COUNTED ON TO BE THE HEART AND SOUL OF THIS PLACE. P YOU EVER HAD A QUESTION ABOUT WHETHER SOMETHING YOU WERE GOING TO DO REALLY WAS EXTENDING AND ADVANCING THE MISSION OF NICHD, THIS WAS A WOMAN WHO UNDERSTANDS THAT TO HER VERY CORE, AND AS SOME OTHERS HAVE SORT OF ALLUDED TO, NOT ONLY WOULD SHE TELL YOU THAT, SHE WOULD TELL YOU THAT YOU WERE ABOUT TO DO SOMETHING THAT WAS TERRIBLE AND VIOLATED THE SPIRIT OF NICHD. IYOU ONLY REALIZE A WEEK LATER WHAT SHE HAD SAID TO YOU, IT WAS JUST WONDER FU. AND THEN THE PEOPLE SKILLS. I HAVE TO ASK YOU A QUESTION, YVONNE. HOW GOOD IS YOUR SPANISH? >> NOT THAT GOOD. >> NOT VERY GOOD? I DIDN'T THINK SO. HERE IS MY FINAL -- HERE'S MY EXPERIMENT. I DID AN OBSERVATIONAL TRIAL. GOING TO SAY WONDERFUL THINGS ABOUT YVONNE'S INTERPERSONAL SKILLS, INCREDIBLE MODEL FOR ALL OF US. BUT YESTERDAY MORNING LITERALLY I SAW THIS EXHIBIT. YVONNE HAS REALLY MISSED US ALL, CLEARLY. PART OF THAT, SHE DOESN'T GET OVER TO BUILDING 31 TO EVEN SEE US ANYMORE, HER NEW INSTITUTE IS NOT IN BUILDING 31, SO SHE WAS OVER IN BUILDING 31 YES, SO SHE MADE SURE WHILE SHE WAS HERE TO VISIT WITH SOME OLD FRIENDS. SO SURE ENOUGH I WALK IN YESTERDAY MORNING, I SAW HER DEEP, DEEP IN CONVERSATION WITH A VERY GOOD FRIEND HERE. THE WOMAN WHO PICKS UP OUR TRASH EVERY DAY. THE WOMAN WHO CLEANS OUR FLOOR. SO THIS INSTITUTE ACTING DIRECTOR WAS TAKING TIME OUT OF HER DAY TO GO HAVE A VERY CLEARLY DEEP CONVERSATION WITH THAT WOMAN. NOW WHAT RAISED IT TO THE LEVEL OF SOMETHING BEYOND MY UNDERSTANDING IS I KNOW FROM TALKING WITH THIS WOMAN FAIRLY REGULARLY MYSELF THAT SHE HAS ALMOST NO ENGLISH WHATSOEVER. I CAN ONLY SPEAK TO HER IN MY VERY BROKEN SPANISH. SO HOW YVONNE THAT DOESN'T EVEN HAVE BROKEN SPANISH WAS HAVING THIS DEEP CONVERSATION WITH HER IS AGAIN SOME KIND OF METAPHYSICAL THING THAT ONLY YVONNE COULD DO, BUT CLEARLY THEY WERE ENJOYING THIS CONVERSATION TOGETHER, I WAVED AT YVONNE AS I WENT PAST, BUT THAT IS PART OF HER PEOPLE SKILLS BECAUSE SHE CARES ABOUT THEM, SHE CARES ABOUT ALL OF US IN THIS ROOM, ALL OF THE PEOPLE SHE WORKS WITH, AND SHE'S BEEN A MODEL FOR ALL OF US IN TERMS OF THAT AND THE OTHER THING SHE DOES, WHICH IS WHY WE -- WHY AS I SAID EARLY THIS MORNING, IT WAS JUST SUCH AN ON VEES THING IF YOU'RE GOING TO ASK SOMEBODY AT THE NIH TO TAKE ON THE CHALLENGES THAT SHE'S TAKING ON NOW, YVONNE WAS JUST SO CLEARLY THE CANDIDATE FOR THAT. SO YVONNE, I HOPE WE HAVEN'T CAUSED TO YOU CRY TOO MUCH. WE'RE NOW GOING TO BRING IN BY GOVERNMENT REGULATION IT CAN'T BE CHAMPAGNE SO WE JUST HAVE SPARKLING CIDER FOR US ALL TO GET TO TOAST YVONNE BEFORE OF SHE HAS A FEW MOMENTS TO DEFEND HERSELF. SO WE'LL PASS OUT THE SPARKLING CIDER, AND MAYBE YVONNE WE'LL LET YOU BEGIN TO COME UP HERE AND TALK, SAY A FEW WORDS AND THEN WE WILL TOAST YOU ALL ONCE YOU FINISH SPEAKING AND ONCE EVERYBODY IS ARMED WITH THEIR CIDER. [APPLAUSE] >> WOW. THIS IS THE TIME IN WHICH I'M SUPPOSED TO GO DOWN INTO MY POCKET AND PULL OUT TWO SHEETS OF PAPER. AND READ TO YOU HOW WONDERFUL IT HAS BEEN LISTEN TO ALL OF THOSE WONDERFUL THINGS YOU'VE SAID, AND I COULD HAVE HAD SOME TIME TO PLAN THAT BECAUSE ALAN HAD WARNED ME THAT THIS WOULD HAPPEN. I THINK HE REALLY THOUGHT THAT WARNING WAS GOOD BECAUSE I THINK HE REALLY DID THINK THAT I MAY NOT SHOW UP. AND I WAS EVEN THINKING THAT MELISSA AND THE DOWN'S SYNDROME TEAM WAS ON BOARD AND PART OF THIS BECAUSE I HAD JUST TALKED TO YOU ALL ABOUT DOWN'S SYNDROME A FEW ROUNDS AGO, AND I SAID ANOTHER DOWN'S SYNDROME TALK, HE'S GOT IT ON THE AGENDA. YOU KNOW, EITHER I COULD HAVE COME PREPARED WITH A TWO-PAGE DOCUMENT TO TELL YOU WHAT IT HAS MEANT TO WORK HERE AT NIH OR I COULD HAVE SANG A SONG? * MEMORIES NOAT OR I COULD HAVE TAKEN YOU ALE OVER TO THE CLINICAL CENTER AND PLAYED THE PIANO. VERY WELL-KNOWN FOR AT MOMENTS LIKE THIS PLAYING THE DPI TAR. THE GUITAR. I DON'T PLAY THE GUITAR BUT I DO PLAY THE PIANO. I KNEW THAT NOTHING THAT I COULD PUT ON PAPER OR NO MUSIC THAT I COULD SING OR PIANO PIECE THAT I MIGHT PLAY WOULD REALLY, REALLY SAY WHAT IT HAS MEANT TO ME TO KNOW ALL OF YOU >> Dr. Anderson: SOME OTHERS WHO I HAVE HAD AN OPPORTUNITY TO WORK WITH. WORKING HERE AT NIH, AND MOST OF THE TIME ACTUALLY HERE AT NICHD, HAS BEEN A REMARKABLE LIFE'S JOURNEY. THE EXPERIENCES, THE PEOPLE THAT I'VE GOTTEN TO KNOW AND THE PEOPLE EY I'VE GOTTEN TO WORK WITH HAVE REALLY, REALLY PLAYED A PART IN SUSTAINING ME AND ACTUALLY CREATING A LIFE FOR ME AND I DON'T MEAN TO SAY THAT MY WORK HAS BEEN EVERYTHING BUT I HAVE TO SAY BEING HERE HAS HAD A STRONG, STRONG IMPACT ON ME, YVONNE, THE PERSON. AND IT REALLY IS BECAUSE OF THE EXCELLENCE IN OUR MISSION AND THE SCIENCE THAT WE ALL SUPPORT, BUT IT REALLY IS MORE THAN THAT. IT REALLY IS BEING A PART OF AN ORGANIZATION IN WHICH WE ARE GIVEN THE OPPORTUNITY TO SERVE. AND HOW MANY PEOPLE, WHEN GIVEN AN OPPORTUNITY TO SERVE, ACTUALLY STEP UP TO THE PLATE AND DO IT? UNLESS THEY HAVE SOME VERY STRONG PRINCIPLES AROUND THE FACT THAT WE WERE ACTUALLY PUT HERE TO HELP AND TO BE A BENEFIT TO OUR OTHER COLLEAGUES. AND THIS INSTITUTE, AND NIH IS GIVING ME AN OPPORTUNITY TO DO THAT, IS GIVING ME AN OPPORTUNITY REALLY TO GIVE MY LIFE MEANING. AND IT'S ALL OF YOU WHO REALLY HAVE CONTRIBUTED TO THAT. WE HAVE DONE SOME WONDERFUL THINGS TOGETHER HERE, I DON'T THINK WE NEED TO SIT DOWN AND CHECK OFF THE ACCOMPLISHMENTS BUT NICHD HAS HAD AN IMPACT IN THE WORLD. AND THE THING THAT HAS -- HAS REALLY STUCK WITH ME AND THE THING THAT STICKS WITH ME IS THE FACT THAT MEMORIES ARE IMPORTANT, AND I AM SO THANKFUL THAT MEMORIES ARE LASTING. , AND I CAN CERTAINLY SAY I'M THANKFUL THAT THEY ARE, BECAUSE I WILL CHERISH TODAY AND I WILL BE FILLED WITH ACTUALLY A REMARKABLE SENSE OF GRATITUDE THROUGHOUT THE REST OF THE TIME THAT I HAVE HERE TO DO GOOD WORK. SO AGAIN, THANK YOU ALL SO MUCH FOR YOUR SUPPORT, FOR YOUR ENDORSEMENT OF ME AS AN INDIVIDUAL, FOR FOLLOWING ME AT TIMES WHEN IT MAY HAVE SEEMED A LITTLE BIT RIDICULOUS, BUT I HAVE LOVED EVERY MOMENT OF WORKING WITH YOU AND THE ONLY THING I CAN LEAVE YOU WITH IS JUST TO SAY THANK YOU. THANK YOU FOR MAKING ME WHO I AM. [APPLAUSE] >> WE HAVE A VERY SMALL TOKEN OF OUR ESTEEM BECAUSE THERE'S NOTHING WE COULD GIVE YOU THAT POSSIBLY WOULD REFLECT THE WAY WE FEEL ABOUT YOU, BUT THIS IS A NICE PORTRAIT OF BUILDING 1, WHO OF COURSE YOU ALSO SERVED DURING YOUR TIME AT NICHD, WHICH SAYS IN HONOR OF HER SERVICE AS DEPUTY DIRECTOR, AND IT JUST -- IT'S AGAIN -- IT'S AN INCOMPLETE RECOGNITION OF THE WAY WE FEEL ABOUT YOU. WE CAN ALL TOAST YOU AND SAY -- AND THIS IS UNUSUAL YOU GET TO SAY ABOUT SOMEONE YOU SPEND YOUR WORK DAY WITH, BUT YOU'RE SOMEONE WHO WE ALL LOVE SO MUCH, AND WE HOLD DEAR, AND YOU ALWAYS WILL BE PART NOT JUST OF NICHD BUT OF WHO WE ARE AS PEOPLE. SO TO YOU AND TO CONTINUED SUCCESS IN ALL OF THE THINGS IN YOUR FAILED RETIREMENT AND YOUR FAILED RETIREMENT THAT'S BOUND TO COME AFTER THIS, ET CETERA, ET CETERA. >> THANK YOU SO MUCH. >> TO YVONNE. >> AGAIN, I WANT TO SAY THANK YOU AND I WANT TO ASK COULD I HAVE A COPY OF THE PHOTO OF THE STAFF? >> ABSOLUTELY. >> I WOULD REALLY LIKE TO HAVE THAT, AND THANK YOU, CATHY AND OTHERS FOR GETTING THAT TOGETHER AND GOT THE PHOTOGRAPHER THERE AND EVERYBODY STANDING UP ON THE LATTER TO SEE THAT -- >> WHILE WE STILL HAD THE BUILDING TO DO IT FROM, RIGHT. >> THANK YOU SO MUCH. AND YOU KNOW, I DIDN'T SAY -- I MADE MY REMARKS PRETTY GENERAL BECAUSE AS MY MOTHER WOULD HAVE SAID, I WAS FULL. AND YOU ALL KNOW MY RURAL BEGINNINGS AND YOU KNOW WHEN I SAY YOU'VE HELPED ME SO MUCH WITH THIS LIFE JOURNEY, MANY OF YOU KNOW FROM WHENCE I CAME BECAUSE YOU TRAVELED TO MY HOMETOWN WHEN MY MOM DIED. SO I AM VERY FULL RIGHT NOW. SO I DIDN'T MENTION ALAN AND DUANE, WHO CONTRIBUTED SO MUCH TO ME, AND WHAT I HAVE BECOME, BUT I FELT THAT THEY KNOW BECAUSE WE WERE REALLY TWO REALLY GOOD TEAMS, MAYBE EVEN DYNAMIC TEAMS. SO THANK YOU.