OKAY, WELCOME TO THE NATIONAL
ADVISORY BOARD ON MEDICAL
REHABILITATION RESEARCH COMING
TO THE FROM THE DEPARTMENT OF
HEALTH AND HUMAN SERVICES, THE
NIH THE NATIONAL INNSITUTES OF
HEALTH.
THIS IS A VIRTUAL MEETING.
WE MEET TWICE A YEAR GENERALLY
IN MAY AND DECEMBER AND FOR THIS
MEETING WE WILL GO FROM 10 AMTO
4:00 P.M. EASTERN TIME.
SO I WILL TURN IT OVER TO THE
BOARD CHAIR DR. BARBARA BREGMAN
TO GET US STARTED.
THANK YOU BARBARA.
>> GOOD MORNING RALPH, GOOD
MORNING EVERYONE.
I DO SO WISH WE WERE SIGHTING
AROUND THE TABLE TOGETHER BUT
GLAD WE'RE ABLE TO BE HERE AT
LEAST VIRTUALLY.
JUST, I WILL GO THROUGH THE
ATTENDEES IN IF YOU JUST WHEN I
CALL YOUR NAME, JUST SAY WHERE
YOU ARE FROM AND YOUR INTEREST,
QUICKLY.
DAWN, WE WILL START WITH YOU.
>> GOOD MORNING EVERYBODY, I'M
DAWN FROM THE UNIVERSITY OF
WASHINGTON AND SEATTLE
WASHINGTON.
I'M A PSYCHOLOGIST AND I AM
INTERESTED AS YOU WILL LEARN
LATER IN PANE AND FATIGUE
MANAGEMENT AND PEOPLE WITH
MULTIPLE SCLEROSIS.
>> BOB?
>> HI, I'M BOB, I'M AT PENN
STATE UNIVERSITY AND PENN STATE
COLLEGE OF MEDICINE AND MY
INTERESTS ARE NEUROCONTROL
MOVEMENT AND RECOVERY FROM
NEUROLOGICAL DISEASE AND STROKE.
LUIS?
>> GOOD MORNING EVERYONE, LUIS
FROM GEORGIA TECH.
MY INTERESTS ARE IN LOOKING AT
NEUROREHABILITATION FOLLOWING
STROKE AND ALSO INTERACTION WITH
PROSTHETIC LIMBS FOLLOWING UPPER
LIMB AMPUTATION.
>> CATHY?
>> HI, MY NAME IS CATHY, I AM AT
THE NATIONAL MS ASSOCIATE,
ASSOCIATE VICE PRESIDENT OF
RESEARCH THERE.
I AM ALSO ADJUNCT PROFESSOR OR
ASSOCIATE PROFESSOR OF JOHNS
HOPKINS SCHOOL OF MEDICINE.
MY INTEREST IS IN
REHABILITATION, RESEARCH AND
WELLNESS AND MS.
THANK YOU.
>> JOSE?
>> GOOD MORNING THIS IS JOSE, AT
THE UNIVERSITY OF HOUSTON, I AM
ALSO DIRECTOR OF THE RUCRC BRAIN
CENTER WHERE WE FOCUS ON
DEVELOPING OUR TECHNOLOGIES, MY
AREA OF INTEREST IS
NEUROENGINEERING IN PARTICULAR
THE INTERFACES AND ALSO THE
EFFECTS OF MUSIC AND DANCE ON
BRAIN ACTIVITY AND BRAIN HEALTH
THANK YOU.
>> MICHELLE JOHNSON?
>> HELLO, EVERYONE.
I AM MICHELLE JOHNSON, I'M
ASSOCIATE PROFESSOR IN PHYSICAL
MEDICINE AND REHABILITATION AT
THE UNIVERSITY OF PENNSYLVANIA
AND ALSO IN BIOEMERGENCYING AND
MECHANICAL ENGINEERING AT THE
UNIVERSITY AS WELL.
I RUN A REHABILITATION ROBOTICS
LAB AND MY INTEREST IS IN THE
INTERSECTION BETWEEN TECHNOLOGY
AND DISABILITY AND TRYING TO
UNDERSTAND HOW WE CAN IMPROVE
MOTOR LEARNING, MOTOR
PERFORMANCE USING THESE
TECHNOLOGY SYSTEMS.
>> THANK YOU.
STEVE?
>> GOOD MORNING BARBARA, STEVEN
FROM HENRY FORD HOSPITAL IN
DETROIT.
I DIRECT CARDIAC REHABILITATION
IN THE DIVISION OF CARDIOLOGY.
MY SUBINTEREST IS EXERCISE
TESTING AND EXERCISE TREANING IN
PATIENTS WITH HEART FAILURE,
HEART TRANSPLANT, MECHANICAL
HEARTS, WITH A LITTLE BIT OF A
SIDE INTEREST IN REHAB IN
PATIENTS WITH CANCER.
>> THANK YOU.
>> CHRIS IN.
>> I'M NOT SAYING IT RIGHTLY?
>> GOOD MORNING EVERYONE, THIS
IS CHRIS, I'M ON FACULTY AT THE
UNIVERSITY OF BUFFALO IN
COMMUNICATIVE DISORDERS AND
SCIENCES WHERE I ALSO DIRECT THE
MOTE OR SPEECH DISORDERS LAB,
I'M ALSO THE ASSOCIATE DEAN FOR
NATURAL SCIENCES AND MATH IN THE
COLLEGE OF ARTS AND SCIENCES.
MY RESEARCH REALLY FOCUSES ON
COMMUNICATION OUTCOMES FOLLOWING
DISARE--ADMINISTRATIVE 3A AND WE
ARE INTERESTED RIGHT NOW IN
OUTCOMES FOLLOWING DEEP BRAIN
STIMULATION IN PARKINSON'S
DISEASE.
>> THANK YOU.
STEVE KRAMER.
>> GOOD MORNING STEVE KRAMER,
STROKE NEUROLOGIST AT UCLA, AND
NIGH LAB WE RESEARCH STROKE
COVERY AS MECHANISMS,
BIOMARKERS, CLINICAL TRIALS AND
SUCH.
>> THANK YOU, LINDA?
>> THIS IS LINDA JONES FROM THE
SHIRLEY RHINE ABILITY LAB IN
CHICAGO AT NORTHWESTERN
UNIVERSITY, I'M A NURSE
SCIENTIST AND A RESEARCH
PROFESSOR IN THE DEPARTMENT OF
PHYSICAL MEDICINE AND
REHABILITATION AT NORTHWESTERN.
MY RESEARCH INTERESTS LIE IN THE
USING OF BEHAVIORIAL
INTERVENTIONS TO INCREASE
PHYSICAL ACTIVITY AND IMPROVE
DIET IN CHRONIC ILLNESSES.
>> THANK YOU SARAH BLANTON?
>> HI, I'M SARAH BLANTON,
PHYSICAL THERAPIST AND PROFESSOR
IN THE DEPARTMENT OF REHAB,
REHABILITATION MEDICINE AND
DIVISION OF PHYSICAL THERAPY AT
EMERY UNIVERSITY AND MY RESEARCH
INTEREST IS AROUND FAMILY CARE
GIVING AFTER STROKE AND
EXPLORING WAYS WE CAN BETTER
INTEGRATE THE FAMILY INTO THE
REHAB PROCESS.
>> THANK YOU.
TIFFANY?
>> SHE MAY NOT BE ON YET?
>> SHE HAS JUST JOINED.
>> OKAY.
>> APRIL HINES?
>> SHOULD I GO?
THIS IS AINCHLLE, GOOD MORNING
EVERYONE, THIS IS AINCHLLE
HINES, IESM THE PUBLIC POLICY
MANAGER FOR THE CHRISTOPHER AND
DANA REEVE FOUNDATION WHERE WE
ADVOCATE FOR PEOPLE THAT LIVE
WITH SPINAL CORD INJURY AND
PARALYSIS AND I AM ALSO A
DEADICATED ADVOCATE FOR PEOPLE
THAT LIVE WITH DISABILITY SINCE
MY OWN DIAGNOSIS WITH MULTIPLE
SCLEROSIS, I CHAIR THAT AS AN
ADVISORY COMMITTEE FOR THE
NATIONAL MULTIPLE SCLEROSIS
SOCIETY.
>> THANK YOU COOPER?
>> GOOD MORNING EVERYBODY, I'M
COOPER, I'M EXECUTIVE DIRECTOR
AT THE AMERICAN ASSOCIATION ON
HEALTH AND DISABILITY AND HAVE
MY OWN LIVED EXPERIENCE AS A
PERSON WITH PHYSICAL
DISABILITIES SO MY INTEREST IS
REALLY IN ADVOCATING FOR PEOPLE
WITH DISABILITIES AND MY
ORGANIZATION SPECIFICALLY DEALS
WITH PUBLIC HEALTH AND
DISABILITY AND THE INTERSECTION
OF PUBLIC HEALTH AND DISABILITY
>> DR. OKIN LAMI?
TIFFANY YU?
>> HELLO, CAN YOU NOT HEAR ME?
>> I COULDN'T HEAR YOU, NOW I
CAN.
>> ALL RIGHT, I'M AN ASSISTANT
PROFESSOR OF FAMILY MEDICINE,
PHYSICAL MEDICINE AND
REHABILATION, NEUROLOGY AND
ORTHOPEDIC SURGERY AT THE AND
ASSISTANT BOARD DIRECTOR AT UCA,
MY CLINICAL INTERESTS ARE
PROVIDING EQUITABLE HEALTH AND
WELLNESS FOR PEOPLE WITH
DISABILITIES AND I ALSO RUN
DISABILITIES FOR THE UNIVERSITY
PROVIDING TESTING AND
ACCOMMODATION AND ADAPTING TO
THE FITNESS PROGRAM, AND I TOO
IDENTIFY AS AN INDIVIDUAL WITH
DISABILITY AS EXPERIENCING A
SPINAL CORD INJURY AND NOW I'M A
WHEELCHAIR USER.
>> THANK YOU, TIFFANY?
>> HI, EVERYONE, THIS IS
TIFFANY, I'M THE FOUNDER AND CEO
OF DIVERSABILITY OR A SMALL
NONPROFIT FOCUSED ON SUPPORTING
DISABLED PEOPLE THROUGH WHAT WE
CALL THEIR SHAME TO PRIDE
TRANSFORT FORMATION AND I ALSO
WROTE A BOOK THAT IS FOCUSED ON
HOW WE CAN ALL TAKE ACTIONS
TOWARD BUILDING A MORE
DISABILITY INCLUSIVE WORLD.
I COME INTO THIS CONVERSATION AS
SOMEONE WHO LIVES WITH BOTH A
PARENT AND NONA PARENT
DISABILITIES AS A RESULT OF A
CAR ACCIDENT AND I MOST RECENTLY
HAVE JOINED THE USA PARACLIMBING
NATIONAL DEVELOPMENT TEAM AND
COME INTO THIS WITH MY OWN
PERSONAL INTERESTS AND COMMUNITY
INTERESTS AROUND INCREASING THE
VISIBILITY AND RESPECT OF THE
DISABILITY COMMUNITY.
>> THANK YOU.
RALPH, DID YOU WANT ME GO
THROUGH ALL THE EXOFFICIO
INDIVIDUALS.
>> YES, IF YOU WOULDN'T MIND,
LET'S GET THEM, TOO.
>> DR. ALLYSON?
>> HI, GOOD MORNING EVERYONE,
ALLYSON, I'M DIRECTOR OF NICHD.
>> LYNN?
>> LYNDON JOSEPH?
>> GOOD MORNING EVERYONE, MY
NAME IS LYNDON JOSEPH, AMOLOL A
PROGRAM OFFICER AT NATIONAL
INSTITUTE ON AGING.
>> TRISHA.
>> TRISHA WITH THE DEPARTMENT OF
VETERANS AFFAIRS, I SERVE AS
EXECUTIVE DIRECTOR FOR
REHABILITATION RESEARCH FOR THE
DEPARTMENT AND WITH RESPECT TO
REHABILITATION RESEARCH ACTIONS
I AM FOR ALL REHAB, ALL
ACTIVITIES, ALL ACTIONS THAT CAN
IMPROVE AND HELP THOSE
INDIVIDUALS WHO EXPERIENCE
REHABILITATION NEEDS.
OF COURSE WITH THE AGENCY WE ARE
VETERAN-CENTRIC FOCUSED BUT THE
KNOWLEDGE WE GAIN IS BENEFICIAL
TO THE NATION AND BEYOND.
THANK YOU ALL.
>> THANK YOU MAX?
>> GOOD MORNING I AM MAX AND I'M
A PROGRAM DIRECTOR OF THE
NATIONAL INTUITY ON DEAFNESS AND
OTHER COMMUNICATION DISORDERS.
>> THANK YOU.
>> GOOD MORNING I'M HERE
REPRESENTING NATIONAL INSTITUTE
OF NEUROLOGIC DISORDERS AND
STROKE.
>> CHUCK?
JOHN?
>> GOOD MORNING EVERYONE I'M
JOHN, DIRECTOR OF THE EXTREME
TRAUMA AND AMPUTATION CENTER OF
EXCELLENCE FOR THE DEPARTMENT OF
DEFENSE AND THE DEFENSE
SELF-AGENCY OUR INTERESTS ARE TO
ASSIST IN PRESERVE FUNCTION IN
EXTREMENDOUSLYITYS AND THOSE
WITH SEVERE TRAUMA.
THANK YOU.
>> THANK YOU KRISTI HILL?
>> ADAM?
>> HI, ERCH I'M ADAM AND
REPRESENT A DIVISION OF PROGRAM
COORDINATION PLANNING AND
STRATEGIC INITIATIVES IN THE
OFFICE OF THE DIRECTOR AT NIH
WHERE I SERVE AS THE SENIOR
ADVISOR FOR DISABILITY HEALTH
RESEARCH.
>> EDWARD?
>> HI, I AM THE CHIEF OF THE
VOCATIONAL REHABILITATION UNIT
AT THE REHABILITATION SERVICES
ADMINISTRATION IN THE OFFICE OF
SPECIAL EDUCATION AND
REHABILITATIVE SERVICES AT THE
U.S. DEPARTMENT OF EDUCATION AND
WE REALLY FOCUS ON DISABILITY,
EMPLOYMENT POM SEE AND
COMPETITIVE INTEGRATED
EMPLOYMENT.
>> THANK YOU.
>> THANKS FOR GOING THROUGH THE
NAMES AND I WANT THANK ALL OUR
FRIENDS AND SUPPORTERS AND
ADVOCATES FOR BEING ON THIS AND
WE ALSO HAVE QUITE AN AUDIENCE
ON THE NIH VIDEOCAST SITE
WATCHING AS WELL AND AS YOU
FOLKS KNOW, THE NIH VIDEOCAST
SITE WILL HAVE THIS ARCHIVED, SO
ANYTHING YOU WANT TO MISS AND GO
BACK OVER, YOU GO TO THE NIH
VIDEOCAST A WEEK FROM NOW AND
THE ARCHIVE VERSION SHOULD BE
AVAILABLE AND IN THE VISION, WE
WILL POST THE MINUTES OF THIS
MEETING ON THE WEBSITE ON NICHD.
SO BARBARA, CONTINUE.
>> SURE.
I ASSUME THAT EVERYONE HAD A
CHANCE TO LOOK AT THE MINUTES
FROM THE DECEMBER MEETING AND
WILL ASK IF THERE THERE ARE ANY
1 WHO DOES NOT APPROVE APPROVEE
MINUTES?
AND IF WE DON'T HEAR THAT WE CAN
APPROVE BY ACCLIMATION.
>> BOSH RA, SORRY, WE NEED A
MOTION TO APPROVE THE MINUTES.
>> OKAY, MAY I HAVE A MOTION TO
APPROVE.
>> MOVE TO APPROVE NSECOND?
>> SECOND TO APPROVE.
>> AND THEN IF PEOPLE COULD
RAISE THEIR HANDS USING THE
LITTLE HAND RAISE.
ALL RIGHT.
OKAY, THANK YOU.
AND BARBARA DO YOU ALSO VOTE --
APPROVE?
, I DID, I PUT MY HAND UP.
>> OKAY, THANK YOU.
>> REMINDER EVERYONE THAT THE
NEXT MEETINGS IF YOU COULD SAVE
THEM ON YOUR CALENDAR, ARE
DECEMBER 1st AND 2nd, 2025,
MAY FOURTH AND FIFTH, 2026, AND
DECEMBER 7th AND 8, 2026.
AGAIN, REMINDER THAT THIS IS
BEING RECORDED CORDED AND WILL E
ARCHIVED.
I WOULD LIKE TO GO AHEAD AND
INTRODUCE OUR FIRST SPEAKER,
DR. ALLYSON CERNIK, BECAME THE
DIRECTOR OF NICHD LAST MONTH AND
SERVED AS DEPUTY DIRECTOR SINCE
2019 AND DR. CERNIK LEADS TO THE
DEPARTMENT OF WORKING GROUPS ON
ROUGH ATOM PRODUCTIVE HEALTHCARE
ACCESS, MATERNAL HEALTH, PATIENT
CENTERED OUTCOMES, AND PRIOR TO
SERVING AS NICHD DEPUTY
DIRECTOR, DR. WAS THE DIRECTOR
OF NICHD'S NATION WALCENTER FOR
MEDICAL REHAPPEN ILLEGALSITATION
RESEARCH WHERE SHE CHAMPIONED
THE EFFORTS THAT IMPROVE HEALTH
AND WELL BEING OF PEOPLE WITH
DISABILITIES AND MANAGED A
RESEARCH PORTFOLIO AIMED AT
ACHIEVING THESE GOALS.
SHE PREVIOUSLY SERVED IN THE
DEPARTMENT OF VEDRANS APPARS,
BOTH AS A CLINICIAN, RESEARCHER
AND POLICY MAKER AND WAS
DETAILED AS LIAISON FOR THE
DEPARTMENT OF DEFENSE TO
COORDINATE EFFORTS IN TRAUMATIC
BRAIN YOUR AND PSYCHOLOGICAL
HEALTH BETWEEN THE DEPARTMENTS.
DR. CERNICH RECEIVED HER DEGREE
FROM THE UNIVERSITY AND A BOARD
CERTIFIED NURSE PSYCHOLOGIST.
AND I WILL TURN THE TEAMS OVER
TO YOU ALLYSON.
GOOD TO SEE YOU.
>> GOOD TO SEE YOU AND IT'S GOOD
TO HEAR SO MANY FAMILIAR NAMES
REALLY SPANS MY ENTIRE CAREER
INTERESTINGLY ENOUGH AND SO I
THINK MANY OF YOU KNOW ME FOR
THOSE OF YOU WHO DON'T, BARBARA
THANK YOU FOR THAT KIND
INTRODUCTION.
I HAVE BEEN INVOLVED IN
REHABILITATION RESEARCH SINCE
THE TIME OF MY GRADUATE SCHOOL
PROGRAM.
I HAVE WORKED WITH SOME OF YOU
AS AN EARLY STAGE RESEARCHER AT
THE DEPARTMENT OF VETERANS
AFFAIRS SPECIFICALLY IN
BALTIMORE, OTHERS OF YOU ACROSS
MY CAREER IN VAOT POLICY SIDE OR
AS I WAS DETAILED TO D.O.D. ON
THE POLICY SIDE AND THEN
OBVIOUSLY MANY OF YOU THROUGH MY
WORK AS THE DIRECTOR OF NCMRR OR
THE DEPUTY HERE AT NICHD, SO
IT'S REALLY NICE TO BE IN A
FRIENDLY ROOM AND TALK A LITTLE
BIT ABOUT WHERE WE ARE AS NICHD,
NIH AND HHS.
SO IF WE CAN GO TO THE NEXT
SLIDE, PLEASE?
SO I WILL GIVE YOU A FEW UPDATES
RELATED TO HHS AND NIH, I WILL
ALSO HIGHLIGHT THINGS THAT ARE
HAPPENING AROUND NICHD THAT
WE'VE BEEN HIGHLIGHTING AS SOME
OF OUR ACCOMPLISHMENTS, ALSO
PROGRAM HIGHLIGHTS THAT MAY BE
OF INTEREST TO YOU ALL AND THEN
A SINGLE STAFF UP DATE.
SO NEXT SLIDE, PLEASE.
SO MANY OF HAVE YOU BEEN
FOLLOWING THE NEWS, I'M SURE, WE
HAVE A NEW HHS SECRETARY, ROBERT
F. KENNEDY JUNIOR, AND ON THE
SAME DAY HE WAS CONFIRMED THERE
WAS A NEW EXECUTIVE ORDER
RELEASED TO ESTABLISH THE
PRESIDENT'S MAKE AMERICA HEALTHY
AGAIN COMMISSION TO INVESTIGATE
AND ADDRESS THE ROOT CAUSES OF
AMERICA'S ESCALATING HEALTH
CRISIS WITH A FOCUS ON CHILDHOOD
CHRONIC DISEASE, AND THE CHRONIC
DISEASES THAT WERE CALLED OUT IN
THE EXECUTIVE ORDER INCLUDED
MENTAL HEALTH CONDITIONS, ON
OBESITY AND DIABETES AND THERE
WAS SOME DISCUSSION OF IMPROVING
NUTRITION AND ACCESS TO HEALTHY
FOODS.
THERE IS SUPPOSED TO BE A
STRATEGY DOCUMENT COMING OUT OF
THE MAKE AMERICA HEALTHY AGAIN
COMMISSION TO ADDRESS CHILDHOOD
CHRONIC DISEASE CRISIS AND THAT
WILL BE WITHIN 180 DAYS, SO THAT
WILL BE COMING UP VERY SOON.
NEXT SLIDE, PLEASE.
WE HAVE NEW LEADERS HERE AT THE
NIH AS WELL, SO DR. BATTACHARYA,
HE TOOK OVER FROM THE PRINCIPLE
DRACT DR. MATH O MATT MEMOLI,
AND HE HAS A LONG STANDARD OF
NIH INVESTIGATOR PRIMARILY
FUNDED ON THE NATIONAL INTUITY
ON AGING AND DR. MEMOLI IS
COMING TO US FROM HIS LABORATORY
AT NIAID AND HE HAS BEEN WORKING
WITH ALL OF US THROUGH THIS
TRANSITION.
AS PART OF THE TRANSITION NEW
ACTING DIRECTORS WERE APPOINTED
IN A NAB OF THE INSTITUTES AND
CENTERS ACROSS THE NIH SO WE
HAVE DR. COURTNEY AKLIN AT THE
NURSING INSTITUTE, SHE WAS
PROFESSOR LIDDELOW LIEUSLY AT
NIMHD AND THE OFFICE OF THE
DIRECTOR.
DR. ANDREA BECKLE-MITCHENER IS
AT THE NIMH, FOLLOWING
RETIREMENT OF DR. SHIRLEY, MANY
OF YOU MAY KNOW
DR. BECKEL-MITCHENER, FROM HER
BRAIN WORK, I HAVE THE HONOR OF
PRIVILEGE OF SERVING AS THE
DIRECTOR OF NICHD.
DR. CAROLYN HUTTER IS AT THE
NATIONAL GENOME INSTITUTE, SHE
WAS RECENTLY APPOINTED THE
COMMON FUND IN THE OFFICE OF THE
DIRECTOR AND NOW OVER ACTING AT
NHGRI, DR. JEFFREY TAUBENBURGER
IS THE NEW DIRECTOR ON THE
ALLERGY AND INFECTIOUS DISEASE
AND HE IS COMING TO US FROM THE
INTRAMURAL PROGRAM IN NIAD, AND
DR. MONICA WEB HOOPER IS THE
ACTING DIRECTOR OF THE NATIONAL
INSTITUTE ON MINORITY HEALTH AND
HEALTH DISPARITIES, SHE WAS
PREVIOUSLY THE DEPUTY DIRECTOR
THERE.
SO THAT'S QUITE A RETINAL
LOCATIONINUE OF CHANGES.
THERE ARE OTHER CHANGES FORTH
COMING THAT WE'RE KEEPING TRACK
OF AND WILL KEEP YOU POSTED OVER
THE COURSE OF THE YEAR.
NEXT SLIDE, PLEASE.
SO THE NEW LEADERSHIP AT NIH HAS
ESTABLISHED PRIORITIES THAT THEY
ARE GOING TO BE REENFORCING OVER
TIME AND DR. BHATTACHAYYA WILL
TALK ABOUT THESE AND THESE ARE
TO INCLUDE POPULATION HEALTH
WITH A FOCUS OBVIOUSLY ON
CHRONIC DEC THAT MIRRORS THE
SECRETARY REPRODUCIBILITY AND
RIGOR, INNOVATION AND
COLLABORATION, RESEARCH SAFETY
AND TRANSPARENCY, AND ACADEMIC
FREEDOM.
AND I THINK MANY OF YOU ALSO SAW
SOME OF THE NEW POLICY
ANNOUNCEMENTS THAT ARE
ACCOMPANYING THESE LEADERSHIP
PRIORITIES IN PARTICULAR THE 1
ON ACADEMIC FREEDOM LAST WEEK.
NEXT SLIDE, PLEASE.
SO NOW WHAT I WOULD LIKE TO DO
IS JUST HIGHLIGHT SOME OF THE
RESEARCH THAT IS COMING OUT OF
NICHD, AND WE DO EVERY YEAR
SELECTED RESEARCH ADVANCES
SHOWCASE, THAT IS AVAILABLE ON
OUR WEBSITE AND I WILL TELL YOU
THAT IF YOU EVER WANT TO JUST
GET A SENSE OF THE BREDTH, SCOPE
AND ACCOMPLISHMENTS ACROSS OUR
PORTFOLIO, BOTH INTRAMURAL AND
EXTRAMURAL THIS, IS A GREAT WAY
TO GET TO KNOW US.
WE REALLY DO HAVE SOME EXCITING
ADVANCES ACROSS THE BREDTH OF
OUR PORTFOLIO, AND IT HIGHLIGHTS
THE WAY THAT WE'RE TRYING TO
DRIVE INNOVATION IN OUR MISSION
AREAS.
SO LET ME GO TO THE NEXT SLIDE.
SO 1 OF THE THINGS WE ARE TASKED
TO DO AT NICHD IS TO LEARN MORE
ABOUT THE IMPACT OF MEDICATIONS
BOTH IN PREGNANCY AND DURING
LACTATION.
AND SO, WANTED TO HIGHLIGHT THE
STUDY THAT WAS PUBLISHED IN
JANUARY THAT REALLY LOOKS AT
WHETHER MATERNAL TREATMENT WITH
LONG-TERM MEDICATIONS CHANGES
THE MACRONUTRIENT COMPOSITION IN
HUMAN MILK AND THIS WAS A STUDY
THAT LOOKED AT MILK SAMPLES WITH
MOTHERS TREATED WITH
ANTIDEPRESSANTS, 106 THAT WERE
TREATED WITH LONG-TERM
ANTIINFLAMMATORY MEDICATIONS,
141 WITH UNDERLYING DISEASES AND
MATCHED MOTHERS.
AND WE HAVE BEEN LOOKING AT THE
MACRONUTRIENT PROFILE, SO FAT,
PROTEIN, CARBOHEIGHTERATE AND
TOTAL ENERGY AND SOME
MEDICATIONS DID REFLECT CHANGES
SO SOME SAMPLES TAKING AN
ANTIDEPRESSANT OR CORTICO
STEROIDS COMPARED TO LOWER
CAMPYS FROM MOTHERS TAKE THOSE
MEDICATIONS THERE WERE AFFECTS
ON FATS IN TERMS OF LOWER LEVELS
BUT CARBOHYDRATES WERE NOT
AFFECTED.
NEXT SLIDE, PLEASE.
ANOTHER STUDY THAT CAME OUT OF
OURNYONATAL RESEARCH NETWORK AND
THIS IS A LARGE SCALE CLINICAL
TRIALS NETWORK THAT WE HAVE,
THIS WAS A RANDOMIZED PLACEBO
CONTROL TRIAL WITH 29 HOSPITALS
THAT WERE PARTICIPATING AND THIS
WAS WAS PUBLISH INDEED APRIL,
THE STUDY IS ENTITLED THE
MODERATELY PRETERM INFANTS WITH
CAFFEINE AT HOME OR APNEA OR THE
MOCA TRIAL, AND THIS IS 1 OF THE
MOST COMMON DISORDERS IN
MODERATELY PRETERM INFANTS AND
OFTEN DELAYS DISCHARGE FROM
HOSPITAL.
AND SO WHAT THESE INVESTIGATORS
WANTED TO DETERMINE IS IF
EXTENDED CAFFEINE TREATMENT
COULD REDUCE THE DURATION OF
HOSPITALIZATION WHILE THEY
PARTICIPATE IN A TRIALED FOR
PREMATURITY, AT NEOPRACTICE
MATURITY TO RESOLVE AND THIS
INCLUDED INFANTS BONE 29-30
WEEKS GUESTATION THAT WERE
RECEIVING CAFFEINE POST
MENSTRUAL AGE, -- POSTPARTUM AGE
AND THEY WERE COMPARED WITH THE
PLACEBO EXTENDED CAFFEINE
TREATMENT DID NOT SHORTEN
HOSPITALIZATION BUT THEY DID
BECOME RECEIVE AT THE CENTER,
BUT HELPFUL RESULTS AND HELPING
TO RESOLVE THESE INFANTS MORE
QUICKLY.
NEXT SLIDE, PLEASE.
SORT OF STAYING ON OUR PRETERM
INFANT THEME, WE'VE HAD EXCITING
RESULTS IN THIS AREA, THIS WAS
ANOTHER STUDY OUT OF THE
NEONATAL RESEARCH NETWORK WHICH
WAS PUBLISH INDEED FEBRUARY, AND
THEY WERE LOOKING TO SEE THE
SHORTEST DURATION OF CORTICO
STEROIDS WAS THAT WOULD IMPROVE
NEONATAL SURVIVAL AND REDUCE
MORBIDITY IN EXTREMELY PRETERM
INFANTS SO WHEN WE TALK ABOUT
EXTREMELY PRETERM INFANTS WE'RE
TALKING ABOUT THOSE BORN BETWEEN
22-27 WEEKS GUESTATION.
AND WE KNOW THAT ANTINATAL
EXPOSURE IS CAUSING SEVERAL
MALAD'SS AND THE IPAD MA BE BORN
WITHIN AN HOUR, UP TO 24 HOURS
AFTER, WE LOOK AT 1806 INFANTS
BORN FREEDOMLY PRETERM AFTER A
SINGLE DOSE OF ANTINADAL BETA
METHA ZONE WITHIN 24 HOURS OF
BIRTH, AND THE RESULTS THAT NOTE
THAD EVERY ADDITIONAL HOUR OF
ADMIN TRAIGDZ OF STEROIDS TO THE
MOTHER AND BIRTH WAS INDEEDEDLY
ASSOCIATE WIDE A 1 PERCENT
RELATIVE INREECE IN SURVIVAL AND
SURVIVAL WITHOUT SEVERE
MORBIDITY.
SO THIS REALLY SUGGESTS THAT IN
PATIENTS THAT ARE AT RISK OF
IMMINENT PREBIRTH, EVEN A SHORT
DURATION OF EXPOSURE TO A SINGLE
DOSE OF STEROIDS MAY BE
BENEFICIAL WITH BENEFITS THE
INFANT INCREASING IN A DURATION
DEPENDENT MANNER.
NEXT SLIDE PLEASE.
OVER TIME NICHD REALLY HAS BEEN
ADVANCING STUDIES RELATED TO THE
USE OF DIGITAL MEDIA AND
TECHNOLOGY BY YOUNGER CHILDREN.
AND WE'VE DONE THAT BOTH THROUGH
STUDIES THAT WE HAVE SPONSORED
OURSELVES AND THROUGH OUR CO
FUNDING OF THE ADOLESCENT BRAIN
AND COGNITIVE DEVELOPMENT STUDY
AND THIS WAS A STUDY PUBLISHED
IN JANUARY, THAT LOOKED AT
TECHNOLOGIES BY SUBTYPE OVER
TIME IN THOSE PARTICIPANTS.
IT WAS ABOUT 11,000 PARTICIPANTS
AND THESE ARE CHILDREN FOLLOWED
FROM THE AGES OF ABOUT 9 OR 10
TO AGES 13 OR 14.
AND ACROSS DIFFERENT TECHNOLOGY
TYPES SO CHILDREN WHO WATCH TV
OR MOVIES, ENGAGE IN VIDEO GAME
PLAY, WATCHING YouTUBE,
ENGAGING ON SOCIAL MEDIA, VIDEO
CHAT AND TEXTING, THEY GOT A
SELF-REPORT FROM THE KIDS AS
WELL AS PARENT INTERVIEWS AND
THEY LOOK AT THE AGREEMENT
BETWEEN THOSE REPORTS AND
ASSOCIATION BETWEEN EACH
ECNOLOGY SUBTYPE AND THE
CHARACTERISTICS OF THESE
CHILDREN FROM A SOCIOLOGICAL
DEMOGRAPHIC PERSPECTIVE AND THEY
REALLY THOUGHT ABOUT, YOU KNOW
WHAT TYPE OF TECHNOLOGY USE, HOW
IT DIFFERS BY THE TECHNOLOGY
TYPE, THEIR AGE, SEX AND
HOUSEHOLD FACTORS AND REALLY
WHAT THEY FOUND IS THAT TIME
ASSOCIATED WITH TB AND MOVIES,
VIDEO GAMES, SOCIAL MEDIA AND
TEXTING INCREASE OVERTIME, THEY
DID NOT SEE A MAJOR INREECE IN
YouTUBE USAGE AND USAGE ALSO
DIFFERED BY SEX.
THERE WERE SOME FINDINGS RELATED
TO USE OF TECHNOLOGY OF CHILDREN
WERE IN A MARRIED HOUSEHOLD WITH
PATIENTS IF THE PARENTS HAVE
HIGHER INCOME OR HIGHER
EDUCATION LEVEL.
AND TO BE HONEST WHICH I THINK
MANY OF US WHO ARE PARENTS
PROBABLY WOULD EXPECT, PARENTS
ESTIMATE OF CHILD TECHNOLOGY USE
WAS LOWER CHAN CHILD
SELF-REPORTING AND THIS MAY FROM
A NUMBER OF FACTORS BUT I THINK
MANY OF US KNOW THAT THERE'S
OFTEN AN UNDERESTIMATION WITH
RESPECT TO SELF-REPORT.
NEXT SLIDE, PLEASE.
I JUST WANT TO HIGHLIGHT A
COUPLE OF PROGRAMS THAT HAVE
RECENTLY HAD SOME EXCITING
PROGRESS OR RESULTS.
MANY OF YOU KNOW THAT WE HAVE
BEEN TRYING TO ADVANCE OUR
ABILITY TO RAPIDLY INNOVATE
ESPECIALLY IN THE DIAGNOSTICS
REALM, AND WE'VE ENGAGED WITH
OUR PARTNERS AT THE NATIONAL
INSTITUTE ON BIOMEDICAL IMAGING
AND BIOENGINEERING TO USE THEIR
RAD-X PLATFORM AND THIS IS A
PLATFORM THAT HELPS US TO SPUR
COMMERCIALIZATION FROM RAPID
SCALING OF TECHNOLOGIES THROUGH
THE USE OF CASH BASED PRIZES AND
DIFFERENT PHASES.
AND WE HAVE RECENTLY USED THIS
MANY OF YOU KNOW IN THE PREVIOUS
ADMINISTRATION, THERE WAS A
FOCUS ON WOMEN'S HEALTH SO WE
DECIDED THAT IN OUR SPHERE OF
INFLUENCE RELATED TO GUIN
ONICOLOGGIC HEALTH DISEASE AND
WOMEN'S SPECIFIC CONDITIONS THAT
WE COULD POTENTIALLY ENGAGE THIS
PLATFORM TO ADVANCE DIAGNOSTICS
FOR ENDOMETRIOSIS, SO THE RAD-X
PROGRAM SHORTENS TIME FROM
DIAGNOSIS WHICH IS TIME FROM
SYMPTOM ONSET TO DEFINITIVE
DIAGNOSIS 10 QUEERS.
IT ALSO REQUIRES A SURNLICAL
DIAGNOSIS AND WE WANTED TO
ELIMINATE THE INVASIVENESS OF
THE DIAGNOSTIC TECHNOLOGY AND WE
WANT TO IMPROVE SAFETY,
CONVENIENCE AND COST, SO WE
LEVERAGE THIS INNOVATION FUNNEL
THAT YOU'RE SEEING RIGHT NOW,
AND THIS WAS PREVIOUSLY USED FOR
COVID-19 DIAGNOSTICS.
WE'VE NOW USED IT FOR POSTPARTUM
MONITORING AS WELL AS TO
INCREASE OUR ABILITY TO DO SOME
OF OUR PRETERM WORK AND PRETERM
RISK.
AND SO WE'RE LOOKING HERE AT 3
PHASES, WE ARE -- WE LOOKED AT
THE TECHNOLOGY PROTOTYPES, THE
TYPE OF TECHNOLOGY AND THEIR
DEVELOPMENT PLANS.
THEY HAD TO HAVE A PROTOTYPE
ALREADY AVAILABLE AND IT HAD TO
BE NONINVASIVE AND WE'VE HAD 8
PHASE 1 WINNERS AND THEY WERE
INVITED TO PARTICIPATE IN THE
PHASE 2 SHARK TANK STYLE
PRESENTATION OF TECHNOLOGIES TO
AN EXTERNAL EVALUATION PANEL AND
A PANEL OF FEDERAL JUDGES.
WE RECENTLY SELECTED 2 PHASE 24
WINNERS, EACH FOLKS GOT A PRIZE
OF A HUNDRED THOUSAND DOLLARS
AND NOW THEY'RE PARTICIPATE
NOTHING A YEAR LONG PHASE 3
TECHNOLOGY DEVELOPMENT SPRINT SO
THEY WILL GET WRAP AROUND
SUPPORT FROM SUBJECT MATTER
EXPERTS AND TECHNOLOGY
COMMERCIAL DEVELOPMENT AND
COMMERCIALIZATION AND WE'RE
HOPING TO GET THOSE PHASE 3
WINNERS SELECT INDEED SPRING OF
2026, SO VERY, VERY SOON AND
NEXT SLIDE, PLEASE.
WHAT'S GREAT ABOUT THIS IS WE'VE
HAD SOME REALLY EXCITING
TECHNOLOGIES EMERGE HERE, SO
I'VE HIGHLIGHTED THE COMPANIES
HERE IN THEIR GENERAL DIAGNOSTIC
APPROACHES INCLUDING SOME
IMAGING TECHNIQUES FOR EXAMPLE,
LOOKING AT -- YOU KNOW LOOKING
AT THINGS RELATED TO URINE
PESTISTAL SIS, SO CONTRACTIONS
IN THE UTERROUS AND THESE ARE
SENSORS AND LOOKING AT
ELECTRICAL ACTIVITY SO KIND OF
LIKE AN ELECTROCARDIOGRAM, ALSO
LOOKING AT ELECTROVISITING
ROGRAPHY, LOOKING AT ELECTRICAL
ACTIVITY OF THE GASTROINTESTINAL
TRACT AND THINKING ABOUT HOW
SMOOTH MUSCLES IN THE
GASTROINTESTINAL TRACT MAY REACT
DURING SYMPTOMATIC PERIODS, ALSO
LOOKING AT 2 COMPANIES REALLY
THINKING ABOUT MENSTRUAL
AFFLUENT AND MARKERS THAT MAY BE
AVAILABLE IN THOSE AND AT-HOME
KITS TO THINK ABOUT HOW TO LOOK
AT SINGLE CELL RNA SEQUENCING OR
OTHER TRANSCRIPTOMIC BIOMARKERS,
SO WE'RE REALLY EXCITED ABOUT
THIS POTENTIAL AND THE RESULTS.
NEXT SLIDE, PLEASE.
SO THE OTHER THING AND I
MENTIONED EARLIER, THAT 1 OF OUR
MAJOR INITIATIVES IS TO LOOK AT
THE EFFECTS OF MEDICATION DURING
PREGNANCY AND LACTATION AND THIS
IS FOR PREGNANT, POSTPARTUM AND
LACTATING WOMEN.
AND 1 OF THE THINGS WE HAVE DONE
TO IMPROVE THE LEVEL OF
INFORMATION THAT PREGNANT WOMEN
AND LACTATING WOMEN RECEIVE, AND
WE'VE BEEN WORKING ON THIS SINCE
2016 BECAUSE OF A LAW THAT
PREGNANT WOMEN, THE TASK FORCE
ON RESEARCH, SPECIFICALLY
PREGNANT WOMEN AND THE CURES
ACT.
WE'VE WORKED FOR QUITE SOMETIME
TO BOTH PUBLIC RECOMMENDATIONS
ON HOW TO IMPROVE THE SCIENCE
AND THEN WE'VE DONE 2
OPPORTUNITIES TO LOOK AT HOW
WELL WE'VE IMPLEMENTED.
WE REALLY NEED TO CHANGE THE
CULTURE OF SAFETY AROUND THIS SO
THAT WE CAN GET SAFETY
EFFECTIVENESS AND DOSING FOR
PREGNANT AND LACTATING WOMEN AND
ALSO POTENTIALLY EVEN GET THE
IMPACTS ON THEIR CHILDREN AND SO
WE HAD A STAKEHOLDER MEET
NOTHING JULY 2024 WHERE WE SET
UP SOMETHING SIM LACK TO WHAT
WE'VE DONE IN THE BEST
PHARMACEUTICALS FOR CHILDREN
ACT, IT'S A PRIORITIZATION
PROCESS TO LOOK AT DRUGS AND
OTHER THERAPEUTIC RESEARCH
PRIORITIES AND WHAT WE HAVE BEEN
DOING IS TO REALLY THINK ABOUT
HOW TO CONDUCT STUDIES FOR THE
VARYING CONDITIONS THAT WERE
PROVIDED AS POTENTIAL PRIORITIES
AND WE WILL START LOOKING AT THE
THERAPEUTIC AREAS THAT WE'RE
GOING TO CONCENTRATE IN AND
REVISIONS TO THE PRIORITIZATION
FRAMEWORK.
NEXT SLIDE, PLEASE.
I THINK MANY OF YOU ARE ALSO
VERY AWARE THAT WE ARE A LARGE
PORTFOLIO IN INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES AND
WE ARE PART OF AN NIH WIDE STUDY
THAT IS LOOKING AT THE
INVESTIGATION OF CO OCCURRING
CONDITIONS ACROSS THE LIFE SPAN
TO UNDERSTAND DOWNS SYNDROME SO
THIS A LARGE SCALE EFFORT THAT
WE PARTNER WITH MANY OTHER NIH
INSTITUTES AND PRIMARILY WORK
WITH A NATIONAL INSTITUTE ON
AGING, THE NATIONAL CANCER
EN--STRATEGIESITUTE AND THE
NATIONAL HEART LUNG AND BLOOD
INSTITUTE BECAUSE OF THE
CO-OCCURRING CONDITIONS WE OFTEN
SEE RELATED TO ALZHEIMER'S
DISEASE, CARDIOVASCULAR
CONDITIONS AND ACTUALLY THE LACK
OF SOLID TUMOR DEVELOPMENT IN
INDIVIDUALS WITH DOWNS SYNDROME
AND SO, THE 3 PARTS OF THIS, ARE
REALLY THINKING ABOUT CONDUCTING
TARGETED HIGH RISK, HIGH REWARD
BASIC SCIENCE STUDIES IN AREAS
RELATED TO DOWNS SYNDROME,
BUILDING A LARGE COHORT OF
INDIVIDUALS WITH DOWNS SYNDROME
ACROSS THE LIFE SPAN TO
PERFORM DEEP PHENOTYPES AND
STUDY COEXISTING CONDITIONS AND
TO REALLY INSURE THAT DOWNS
SYNDROME ARE INTEGRATED IN
CLENICAL FUTURE TRIALS, VERY
SIMILAR TO WHAT WE'VE DONE FOR
OTHER POPULATIONS AS I'VE
MENTIONED TO INSURE THAT WE
UNDERSTAND THE SAFETY, EFFICACY
AND EFFECTIVENESS OF MEDICATIONS
IN THIS POPULATION.
SO WE'VE -- THIS PROGRAM
SUPPORTED ABOUT $90 MILLION IN
RESEARCH AND 2024.
NEXT SLIDE, PLEASE.
IN 2024 THAT $90 MILLION
INCLUDED THE LAUNCH OF A
20 MILLION-DOLLAR DOWN SYNDROME
COHORT PROGRAM, SO WE HAD 5
SITES PARTICIPATING PLUS
COMMUNITY PARTNERS AND THIS IS
REALLY TO IMPROVE OUR
UNDERSTANDING OF THE
HETEROGENEITY OF THE POPULATION
AND THE NATURAL HISTORY OF DOWNS
SYNDROME OR BE TRACKING THE
HEALTH OF PEOPLE FROM DOWN
SYNDROME FROM BIRTH TO ADULTHOOD
AND THIS IS LOOKING AT THE
SOCIAL, EXPERIENCIAL AND
ENVIRONMENTAL FACTORS THAT
IMPACT OUTCOMES.
WE WANT TO ACCELERATE THE
KNOWLEDGE OF HELT CONDITIONS
THAT MORE COMMONLY AFFECT THOSE
WITH DOWNS SYNDROME AND REALLY
IMPROVE THE QUALITY OF LIFE FOR
INDIVIDUALS AND THEIR FAMILIES.
WE'RE HOPING TO START
RECRUITMENT WITH THIS STUDY IN
THE LATTER HALF OF 2025.
AND THEN WE WILL TART TO EXPAND
NEW STUDY SITES OVER THE NEXT
5-10 YEARS.
NEXT SLIDE, PLEASE.
THIS IS A CONFIDENTIAL ONLINE
SURVEY TOOL THAT COLLECTS
INFORMATION ABOUT PEOPLE WITH
DOWNS SYNDROME AND THIS WAS
CREATED BY NICHD TO ENABLE THE
DOWNS SYNDROME COMMUNITY TO
EXPRESS WITH RESEARCHERS, THEY
CAN EXPRESS CLINICAL STUDIES,
CONDUCT SURVEYS TO IMPROVE
UNDERSTANDING OF THEIR HEALTH
ESPECIALLY AT THEIR AGE.
WE'VE GOTTEN IMPORTANT HEALTH
DATA FROM NEARLY 6000 PEOPLE
WITH DOWNS SYNDROME AND WE
SUPPORTED OVER A HUNDRED
RESEARCH STUDIES IF ARE
RECRUITMENT.
WE PAUSED THIS REGISTRY IN 2024
BECAUSE WE NEEDED TO REFRESH IT
AND IMPROVE ITS FUNCTION AND SO
WE RELAUNCHED IT IN MARCH OF
2025 WITH AN UPDATED LOOK AND
FEEL AND IMPROVE THE USER
FRIENDLINESS OF IT AND INSURED
IT WORKED ACROSS DIFFERENT
DEVICES AND SO WE WILL CONTINUE
TO ENHANCE THIS WORK OVER TIME
AND REALLY TRY TO THINK ABOUT
FEATURES THAT WILL WORK WITH THE
COMMUNITY AND MEET THEIR NEEDS.
NEXT SLIDE.
I ALSO WANT TO MAKE MANY OF YOU
AWARE OF THIS P. A. R. WE HAVE
FROM NICHD.
WE HAVE QUITE A LARGE NETWORK
INFRASTRUCTURE AND WE WANTED TO
INSHOULD THAT FOLKS COULD ACCESS
THIS INFRASTRUCTURE TO CONDUCT
INNOVATIVE RESEARCH IN A KIND OF
MORE OPEN WAY THAT STILL
INCLUDES SCIENTIFIC REVIEW, BUT
OPENS OUR NETWORK INFRASTRUCTURE
MORE BROADLY, AND SO THIS P. A.
R. LEVERAGING NETWORK
INFRASTRUCTURE TO CONDUCT
RESEARCH AND FOR PEOPLE WITH
DISABILITIES AND LACTATING
WOMEN, YOUR BUDGET IS LIMITED TO
DIRECT COSTS OF $6.25 MILLION
FOR THE ENTIRE PROJECT, THIS
WOULD BE PHASES, YOUR PLANNING
PHASE AND YOUR IMPLEMENTATION
PHASE BUT IT REALLY CAN BE USED
FOR THE DISABILITY COMMUNITY TO
SUPPORT CLINICAL TRIAL ANDS
TODAYS.
TODAY -- STUDIES AND THIS IS A
PLATFORM FOR INVESTIGATOR
INITTATION RESEARCH AND
INVESTIGATING AREAS.
NEXT SLIDE, PLEASE.
SO JUST LAST PROGRAM UPDATE I
HAVE FOR YOU ALL, MANY OF YOU
ALL ARE ALSO AWARE THAT NIH HAS
BEEN ACTIVELY ACTIVATING DATA
SHARING AND MONITORING PLANS,
AND THIS HUB HAS BEEN NICHD'S
GENERAL DEPOSITION POINT FOR
MOST OF OUR STUDIES FOR QUITE
TIME NOW.
IT'S A CENTRALIZED RESOURCE THAT
WE HOPE ALLOWS RESEARCHERS TO
ACCESS DEIDENTIFIED DATA FUNDED
BY NICHD, WE HAVE 230 STUDIES ON
OVER 60 TOPICS ON THE PLATFORM,
SO, WE HAVE RUN INTO A LITTLE
BIT OF A CONTRACT ISSUE WITH
RESPECT TO THIS AND WE DO HAVE
BIOSPECIMENS AVAILABLE AS WELL
AS DATA BUT WE ARE GOING TO
MIGRATE THIS TO A SHARED
PLATFORM THAT'S HOSTED AT NIH
INSTEAD OF MAINTAINING OUR OWN
REPOSITORY, WHAT WE FOUND IS
THAT BY LINK INTOG A CENTRALIZED
INFRASTRUCTURE WE WILL BE ABLE
TO GAIN REALLY EXCITING SECURITY
FEATURES AS WELL AS TECHNICAL
FEATURES THAT WILL BETTER SERVE
THE COMMUNITY SO WE WILL
TRANSITION TO THE BIOMEDICAL
RESEARCH INFORMATICS COMPUTING
SYSTEM OR THE BRICKS DATA
SCIENCE PLATFORM.
FOR THOSE IN THIS COMMUNITY, YOU
ARE PROBABLY REALLY ACTUALLY
ALREADY FAMILIAR WITH BRCS, IF
YOU HAVE DONE ANY HOSTING THERE,
SO AS WE MIGRATE OVER TO THIS
MODULAR WEB BASED SYSTEM WE WILL
TAKE THE DATA DOWN FOR A MOMENT
SO STARTING TODAY, ACTUALLY DASH
WILL BE UNABLE FOR FOLKS TO
PROVIDE OR RECHIEF DATA.
WE HAVE BEEN COMMUNICATING WITH
THE COMMUNITY ABOUT THIS SO IT'S
NOT NEW NEWS FOR THOSE WHO HAVE
BEEN USING IT WE'RE HOPEFUL WE
WILL BE ABLE TO GET THIS BACK UP
BY FALL WORKING WITH OUR TEAM
AND THIS WILL BA KNOW EXCITING
NEW DEVELOPMENT, I THINK WE WILL
GET GREAT FUNCTIONALITY OUT OF
THIS.
NEXT SLIDE, PLEASE.
AND I JUST WANT TO MENTION THE
STAFF UPDATE, NEXT SLIDE, SOME
OF YOU HAVE BEEN WORKING IN THE
CHILD AND BEHAVIORIAL
WREFIOUSLY, BRETT MILLER IS THE
ACTING DIRECTOR THERE, HE WAS
OVER THE LEARNING DISABILITIES
PROGRAM AND HAS BEEN REALLY
INVOLVED IN INCREASING KNOWLEDGE
RELEVANT TO TYPICAL AND ATYPICAL
DEVELOPMENT OF READING AND
WRITTEN LANGUAGE.
HE'S ALSO BEEN 1 OF THE CO-LEADS
OF THE TOP INITIATIVE THAT WE
HAVE UPDATER TAKEN WITH THE
NATIONAL INSTITUTE OF DEAFNESS
AND COMMUNICATION DISORDERS.
HE'S A Ph.D. AND COGNITIVE
PSYCHOLOGY AT THE UNIVERSITY OF
MASSACHUSETTS AMHURSTS AND HE IS
STEPPING IN FOR JAMES GRIFFIN
AFTER MANY YEARS OF NICHD
INCLUDING AS THE BRANCH CHIEF OF
CDBB.
SO WITH THAT I WILL STOP AND
TAKE QUESTIONS AND I WILL BE
MONITORING THE CHAT BUT ALSO
WORKING WITH OUR TEAM SO HAPPY
TO ANSWER ANY QUESTIONS FROM
FOLKS.
>> THANK YOU SO MUCH ALLYSON.
LOTS GOING ON.
FOR THOSE WHO HAVE QUESTIONS
PLEASE RAISE YOUR HAND AND I
SCHEDULE FOR RALPH'S HELP
BECAUSE I AM NOT SEEING HANDS
RAISED.
>> I DON'T SEE ANY HANDS RAISED
AT THIS TIME.
CAN I ASK ALLYSON, WHAT DO YOU
SEE AS THE GREATEST
OPPORTUNITIES MOVING FORWARD?
>> SO, YOU KNOW I THINK THAT WE
HAVE RIGHT NOW, A NUMBER OF
CHALLENGES, RIGHT?
BUT I DO SEE THE REAL
OPPORTUNITIES THAT I'M SEEING
RIGHT NOW ARE NICHD HAS BEEN
REALLY TRYING TO OPEN MANY OF
OUR PROCESSES SO THAT WE ARE AS
I NOTED WITH THE NETWORK
INFRASTRUCTURE FOR EXAMPLE, WE
ARE TRYING VERY HARD TO MAKE
MOST OF OUR RESOURCES MORE
AVAILABLE TO RESEARCHERS ACROSS
OUR DIFFERENT AREAS OF MISSION.
AND SO, I THINK WHAT'S REALLY
INTERESTING ARE THE
OPPORTUNITIES WE HAVE TO
POTENTIALLY LEVERAGE THE LARGE
SCALE INFRASTRUCTURE THAT WE
DEVELOPED AND ASK QUESTIONS
ABOUT VERY EARLY REHABILITATION
FOR EXAMPLE, OF PRETERM INFANTS
AND I THINK WE HAVE HAD THOSE
INITIATIVES IN THE PAST BUT I
THINK THIS REALLY PORTENDS AN
OPPORTUNITY.
THE OTHER IS BECAUSE WE
PARTICIPATE IN A NUMBER OF THESE
NIH WIDE PROGRAMS SO EXAMPLE
THEY INCLUDE INITTIAIVE ITS TO
THINK ABOUT HOW DO WE ADVANCE
THINGS LIKE BETTER CONSENTING OR
PARTICIPANT JOURNEYS AND
INDIVIDUALS WITH DISABILITY AND
WE WORK WIDE SOME OF OUR
PARTNERS WITH THAT ON THE PAST
AND I THINK WE HAVE THE
OPPORTUNITY TO DO MORE WITH
THAT.
AND SO I WILL JUST SAY THAT I
THINK THIS IS A REALLY
INTERESTING TIME TO ENGAGE IN
THIS RESEARCH, I THINK WE BUILT
A LOT OF INFRASTRUCTURE, SOME OF
YOU KNOW I HAVE AN INTRAMURAL
RESEARCH PROGRAM I'VE BEEN
WORKING WITH SOME OF YOU ON THIS
AND I WORK WITH THE
REHABILITATION MEDICINE
DEPARTMENT AT THE CLINICAL
CENTER, WE'RE WORKING WITH THE
ALL OF US PLATFORM TO BETTER
INTEGRATE DISABILITY MEASURES,
FUNCTIONAL STATUS AND
INFORMATION ABOUT ASSISTIVE
TECHNOLOGY AS PART OF MY
INTRAMURAL LAB.
SO I REALLY THINK THAT THE
RESOURCES THAT WE ARE HERE AT
NIH ARE ALWAYS RICH AND IT GIVES
US A REAL OPPORTUNITY TO BUILD
BOTH DISABILITY AND
REHABILITATION RESEARCH INTO
THEM.
>> THANK YOU.
ANY OTHER COMMENTS IN
>> THIS IS USUALLY NOT A SHY
GROUP SO I'M KIND OF --
>> THE RAISED HAND FUNCTION IS
ON THE TOP OF YOUR SCREEN OR IF
NOT JUST SHOUT OUT.
LUIS?
>> HELLO ALLYSON GREAT TO SEE
YOU AND HEAR FROM YOU THIS
MORNING.
JUST A QUICK QUESTION, THINKING
OFF BARBARA'S QUESTION ABOUT NIH
WIDE INITIATIVES, CUTTING
PROGRAMS WE'VE BEEN FAMILIAR
WITH THE LAST FEW YEARS AND
THINKING ABOUT HOW, YOU KNOW AS
AN ADVISORY BOARD BUT ALSO THE
VISION BROADENING OUT NIEKS H
AND NEURO, AND VARIOUS OTHER
ADULT REHAB OPPORTUNITIES ACROSS
THE LIFE SPECTRUM.
FROM CHILD AS YOU INDICATED ALL
THE WAY THROUGH ADULTHOOD AND
COLLABORATIVE OPPORTUNITIES TO
DEVELOP SOME OF HOW YOU SEE
THOSE CONVERSATIONS MOVING
FORWARD.
>> SURE AND LUIS, GREAT TO HEAR
FROM YOU.
SO I THINK THE REAL
OPPORTUNITIES, I THINK NICE PART
FOR US RIGHT NOW, SO FOR
EXAMPLE, MYSELF AND THERESA ARE
STILL REALLY WORKING THROUGH THE
BRAIN INIAATIVE AND THE
BLUEPRINT FOR SCIENCE TO IMPROVE
THOSE THERE, SO FOR EXAMPLE THE
MED TECH PROGRAM IN BLUE PRIPT
IS A COOL OPPORTUNITY TO DEVELOP
NEW NEUROLOGIC DEVICES.
WE ALSO BRING -- WHILE IT TOOK A
BUDGET CUT IS STILL WORKING TO
FUND NEW INITIATIVES AND ADVANCE
TAKEN--THEY SCIENCE, SO THEY --
WE SWRUOF THE REVIEWED THEIR PAY
PLAN FOR THIS YEAR AND THEY ARE
GOING TO BE FUNDING NEW GRANTS,
THE HEAL INITIATIVE IS STILL A
MAJOR PROGRAM.
I SERVE ON THAT EXECUTIVE
LEADERSHIP COMMUNITY AND I THINK
1 OF THE BIG ADVANCES WE HAD
THERE WAS THE FUNDING OF THE
BACK PACK INITIATIVE AND SOME OF
THAT WORK IS CONTINUING RELATED
TO BACK PAIN AND SUBTYPES OF
BACK PAIN, ETIOLOGY AS A BACK
PAIN AS WELL AS INTERVENTION
SYSTEM WHAT THEY'RE REALLY
THINKING ABOUT NOW AS WELL AS
WE'VE GOTTEN A NEW INIAATIVE ON
PEDIATRIC PAIN BECAUSE OF THE
WORK OF OUR TEAM AND SO, THAT IS
A REALLY EXCITING NEW CLINICAL
TRIALS INITIATIVE TO THINK ABOUT
HOW WE BETTER TREAT PEDIATRIC
PAIN IN THE ACUTE PHASE SO THAT
CHILDREN DO NOT GET PRIMED FOR
MORE CHRONIC USE OF OPIOIDS FOR
EXAMPLE.
SO THESE ARE 2 EXAMPLES, I'M
ACTUALLY ON WAY MORE COMMITTEES
THAN ANY OF YOU EVER WANT TO
HEAR ABOUT BUT I WILL SAY THAT I
THINK WITHIN EACH OF THOSE LARGE
SCALE INITIATIVES SOME OF YOU
HAVE BEEN PART OF THE STROKE NET
WHICH IS A MAJOR INITIATIVE OR
SIREN, YOU KNOW IN EACH OF THOSE
I THINK WE DO HAVE ACROSS THE
NIH OPPORTUNITIES TO REALLY
ADVANCE REHABILITATION SCIENCE
OR LOOK AT HOW TO BETTER
INTEGRATE INDIVIDUALS WITH
DISABILITY INTO THOSE FRAMEWORKS
AND I THINK, YOU KNOW AS YOU
LOOK ACROSS YOUR AREAS OF
SPECIALTY, NOT SOME PLACE WHERE
I THINK WE CAN BE MORE EFFECTIVE
MOVING FORWARD.
>> THANK YOU.
CATHY?
>> HI, ALISON, GREAT TO HEAR FRU
YOU AND SEE YOU, WISH IT WAS IN
PERSON BUT IT'S BETTER THAN
NOTHING.
I GUESS I JUST CAME BACK FROM A
GAIT AND BALANCE MS SYMPOSIUM
AND A LOT OF SCIENTISTS THERE
ARE ASKING QUESTIONS ABOUT HOW
IS THE REVIEW PROCESS FOR
GRANTS, WOOING.
WHAT IS THE POTENTIAL FOR
APPLYING FOR NEW GRANTS IN THE
AREA OF AMPUTATION AND WELLNESS.
I WONDERING IF YOU COULD COMMENT
ON THAT?
>> SURE.
I THINK MANY OF YOU HAVE HEARD
THAT WE'RE MOVING TOWARD A
CENTRALIZATION OF SCIENTIFIC
REVIEW, SO FOR THOSE NOT AS
FAMILIAR WITH THE NIH REVIEW
PROCESS OR HAVEN'T, YOU KNOW
GOTTEN VERY FAR IN THE WEEDS ON
THIS OFTEN WHAT WAS DONE HERE AT
NIH IS THAT THE CENTER FOR
SCIENTIFIC REVIEW WOULD PROVIDE
REVIEW FOR THE PARENT ANNOUNCE
WANTS OR SOME OF OUR SHARED
INITIATIVES BUT THAT OFTEN THE
INTUITYS WOULD REVIEW FOR OUR
OWN FUNDING OPPORTUNITYS, RIGHT
SO OUR NOTICES OF FUNDING
OPPORTUNITIES WE WOULD PROVIDE
TRAINING, ET CETERA.
WE ALSO PROVIDED TRAINING FOR
CONTRACTS, RESEARCH CONTRACKS.
NOW WHAT WE'RE DOING IS WE ARE
GOING TO BE MOVING TO A
CENTRALIZED REVIEW PROCESS THAT
WILL BE RUN BY THE CENTER FOR
SCIENTIFIC REVIEW.
THAT PROCESS IS ONGOING SO WE
HAVE DETAILED SOME OF OUR STAFF
OVER TO THE TRUSTEES FOR CENTER
FOR SCIENTIFIC REVIEW MORE
IMMEDIATELY TO WORK ON THAT
CENTRALIZATION AND THIS WILL BE
AN ONGOING PERSONNEL PROCESS.
WE ARE GETTING THOSE FOLKS
APPOINTED OVER THERE TO WORK ON
REFERRAL AND RECEIPT TO WORK AS
SROs THERE TO PROVIDE REVIEW.
THERE MAY BE SOME SLIGHT DELAYS
THIS YEAR GOING INTO WHAT WE
CALL ACT COUNCIL, AS MANY OF YOU
KNOW WE DO OUR OCTOBER COUNCILS
IN SEPTEMBER JUST SO WE CAN
INSURE WE HAVE THE OPPORTUNITY
TO FUND MERITORIOUS APPLICATIONS
POTENTIALLY GET THOSE GOING
EARLIER.
SOME OF THOSE MIGHT BE SLIGHTLY
DELAYED, NICHD MAY NOT HAVE AS
MANY OF THOSE AS OTHERS DO SO
OUR FUNDING IS NOT QUITE AS
HAMPERED BY THAT.
AND WE HAVE BEEN ASSURED THAT
CSR WILL TRY VERY HARD TO GET
OUR REGULAR REVIEW FOR THE
SUMMER DONE IN TIME FOR THAT
COUNCIL.
IT'S JUST THE NOFOs THAT MIGHT
BE SLIGHTLY DELAYED.
THEY'RE HOPING TO GET RIGHT BACK
ON SCHEDULE BY FY26.
AND I WOULD SAY THAT RIGHT NOW
WE ARE REALLY LOOKING TO FUND
WITHIN OUR REGULAR DISCRETIONARY
ZONE SO FOR FY25, WE KNOW OUR
BUDGET, WE'RE UNDER A CONTINUING
RESOLUTION AND SO, YOU KNOW THAT
MONEY IS AVAILABLE TO US AND WE
ARE CONTINUING TO WORK THROUGH
OUR PAY PLANS FOR THIS YEAR.
WE DID RECEIVE OUR MONEY A
LITTLE BIT LATE SO THERE MAY BE
SOME DELAYS.
IT'S NOT LIKE WHEN WE GET OUR
FUND NOTHING OCTOBER, WHICH I
THINK HAS HAPPENED ONCE SINCE
I'VE BEEN HERE BUT MOST FOLKS
KNOW THAT WE WAIT AND FUND
CONSERVATIVELY UNTIL THEN.
IN TERMS OF FY26, YOU KNOW THAT
BUDGET FORECAST IS MORE
UNCERTAIN AND JUST TO REMIND
EVERYBODY THAT YOU MAY HAVE SEEN
THE PRESIDENT'S SKINNY BUDGET BE
RELEASED LAST WEEK, I THINK
THAT'S MADE THE NEWS QUITE A LOT
AND JUST A REMINDER THAT THAT IS
A PROPOSAL THAT GOES TO
CONGRESS, RIGHT, BACK IN OUR
SCHOOL HOUSE ROCK DAYS WHEN WE
ARE REMEMBERING OUR CIVICS, THE
PRESIDENT PROPOSES WHAT THE
EXECUTIVE OFFICE WOULD LIKE TO
DO AND THEN THE LEGISLATURE
TAKES THAT UP AND PROVIDES
APPROPRIATE APPROPRIATIONS BACK
TO THE EXECUTIVE WITH SPECIFIC
DIRECTIVES AND LEVELS AND SO,
THAT PROCESS IS NOW ONGOING.
WE WILL SEE THE DETAILS OF THOSE
BUDGETS COMING OUT IN THE COMING
WEEK BUT JUST AS A REMINDER THAT
THOSE ARE PROPOSALS, SO UNTIL WE
HAVE AN APPROPRIATION WITH
SPECIFIC FUNDING LEVELS
INCREASES, I CAN'T GIVE YOU ANY
CERTAINTY ON FY26.
YOU KNOW WE ARE GOING TO
CONTINUE TO DO OUR WORK WITHIN
THE CONFINES OF THE BUDGET AND
LAWS THAT WE HAVE.
>> THANK YOU.
>> MICHELLE, YOU HAD A QUESTION?
>> HELLO ALISON.
THANK YOU FOR YOUR PRESENTATION.
I JUST HAD A QUICK QUESTION
AROUND SOME OF THE HEALTH
DISPARITY KIND OF WORK THAT WE
NORMALLY DO AND THERE'S BEEN A
LOT OF TALK ABOUT WELL, HOW IS
THAT AFFECTED BY THE DEI KIND OF
CHANGES AND ALSO HOW DO WE
ADJUST OUR GRANT WRITING BECAUSE
HEALTH DISPARITY SYSTEM STILL
REAL SO DO YOU HAVE ANY ADVICE
WE COULD GIVE TO FOLKS THAT ARE
ASKING US ABOUT THAT AND HOW IS
NICHD REACTING TO THAT
PARTICULAR SITUATION?
>> RIGHT.
THANKS MICHELLE FOR THE
QUESTION, REALLY APPRECIATE THIS
ATTENTION.
I THINK THERE ARE A COUPLE
THINGS HAPPENING RELATED TO
THIS.
NUMBER 1 IS THAT WE ARE GOING
THROUGH ALL OF THE NOTICES OF
FUNDING OPPORTUNITY THAT'S BEING
DONE CENTRALLY AT NIH THROUGH
THE OFFICE OF EXTRAMURAL
RESEARCH AND WE ARE REPUBLISHING
MANY OF OUR NOTICES OF FUNDING
OPPORTUNITY TO GIVE BETTER
GUIDANCE TO THE EXTRAMURAL
COMMUNITY ABOUT THE WAY THAT
THIS IS BEING IMPLEMENTED, AT
THE NIH RELATIVE TO GRANT
WRITING.
I THINK THE OTHER THING THAT YOU
SHOULD BE AWARE OF IS THAT
DR. BHATTARYACHARIA, IS HOPING
TO GET GUIDANCE OUT TO THE FIELD
VERY SOON AND THIS WILL
POTENTIALLY BE REFLECTED IN THE
POLICY STATEMENT.
AND SO, I THINK THE ANSWER TO
YOUR QUESTION IS THIS IS
EVOLVING AS WE SPEAK.
AND THAT WE WILL PROBABLY GET
MORE INFORMATION RELATED TO
THIS.
MY HOPE IS WITHIN THE NEXT MONTH
OR SO, AND YOU KNOW ONCE WE HAVE
IT, I'M SURE THAT, THERESA IS
HER TEAM WILL GET IT OUT TO YOU
AND OBVIOUSLY ALSO THINK ABOUT
THE GRANTS AND FUNDING
INFORMATION STATUS PAGE BECAUSE
THAT WILL GIVE YOU MOST OF THE
INFORMATION IN TERMS OF WHAT OUR
CURRENT POLICIES AND STANCES ARE
RELATED TO THIS THESE ISSUES.
>> THANK YOU.
ANY OTHER QUESTIONS?
>> HI, ALISON, IT'S KARL COOPER,
I KNOW WHEN WE MET IN DECEMBER
THERE WAS DISCUSSION ABOUT THE
GRANTS THAT WERE HANDED OUT, DO
YOU KNOW THE STATUS OF THOSE,
HAVE THEY BEEN AFFECTED AT ALL.
>> TO MY KNOWLEDGE, THEY HAVE
NOT BEEN AFFECTED, I WILL ASK
THERESA TO CONFIRM THAT.
>> YES, THEY ARE STILL OPEN AND
ACTIVE AND WE HAVE NOT HEARD
OTHERWISE.
>> OKAY, THANK YOU.
>> ACTUALLY IF YOU DON'T MIND A
HAD ANOTHER QUESTION FOLLOWING
UP ON THE -- I KNOW LAST
DECEMBER WE TALKED ABOUT THE NEW
REVIEW POLICIES AND BLINDED
RERUE AND THE NEW REVIEW PROCESS
HAS THAT BEEN IMPLEMENTED, ARE
WE GOING FORWARD WITH THAT NEW
REVIEW PROCESS?
SHOULD WE BE KIND OF WRITING OUR
GRANTS TOWARDS THAT BECAUSE I
KNOW THERE WAS A DELAY IN WHICH
THE FORMS WERE GOING TO START
USING FOR THE RO-1 SO I'M JUST
CURIOUS ABOUT ARE WE STILL
TRANSITIONING TO THE NEW MORE
BLINDED REVIEW PROCESS.
>> SO WE HAVE MOVED TO THE
SIMPLIFIED REVIEW CRITERIA.
WE HAVE NOT NECESSARILY
IMPLEMENTED BLINDED REVIEW TO MY
KNOWLEDGE.
WHAT I THINK YOU'RE REFERRING TO
IS THE -- ESSENTIALLY THE WAY --
THE WAY THAT THE SCORING
CRITERIA ARE BEING USED AND THE
DEEMPHASIS OF SOME OF THE
FACTORS RELATED TO REVIEWS, SO
THAT IS BEING IMPLEMENTED, THE
FORMS HAVE NOT FOLLOWED AS
QUICKLY I THINK, THERESA CAN
PROBABLY GIVE YOU MORE AT THE
DETAIL LEVEL THAN I CAN TO BE
QUITE HONEST WITH YOU, I THINK
OUR PROGRAM OFFICIALS ARE MUCH
MORE IN THE WEEDS ON THAT AT
THIS MOMENT THAN I AM, I HAVE
NOT GOTTEN DOWN TO THE FORM'S
LEVEL BUT I DON'T THINK ALL THE
FORMS HAVE UPDATED YET, THERESA?
>> THE FORMS DIDN'T NEED TO
UPDATE FOR THAT, BUT THERE HAVE
BEEN A DELAY IN THE
IMPLEMENTATION FOR FELLOW SHIPS,
SO THAT DATE IMPLEMENTATION DATE
WAS PUSHED BACK, BUT THOSE WENT
INTO EFFECT WITH ESSENTIALLY
FEBRUARY FIGHT DUE DATE SO WE
HAVEN'T SEEN THE REVIEW FOR
THOSE YET.
SO WE DON'T HAVE KIND OF
FEEDBACK FOR YOU.
>> THANK YOU.
NOT HEARING OR SEEING ANYMORE
QUESTIONS, ALISON ON BEHALF OF
ALL OF YOU WE WOULD LIKE TO
THANK YOU FOR YOUR PRESENTATION
AND WHAT YOU'RE DOING MOVING
FORWARD.
>> THANK YOU.
APPRECIATE YOU ALL, THANK YOU SO
MUCH AND I AM HERE IF ANYBODY
HAS QUESTIONS, I WILL STAY FOR
THERESA'S PRESENTATION SO I CAN
HEAR THE AWESOME THINGS GOING ON
IN NCMRR.
IN, AND THEN WE WILL TRANSITION
TO THERESA CRUZ FOR THE
NCMRR DIRECTOR'S REPORT.
THERESA, THE SCREEN IS YOURS.
>> THANK YOU.
I'M GOING TO TRY TO TAKE
CONTROL.
SEE IF THIS WORKS.
DOES THAT LOOK OKAY?
>> YEAH.
>> IT DOES NTHANKS EVERYBODY.
AND THANK YOU ALISON AND GIVING
THAT PERSPECTIVE FROM NIH AND
NICHD AND THANK YOU ALL FOR
JOINING.
I THINK THIS MIGHT BE THE FIRST
TIME WE'VE HAD EVERY MEMBER JOIN
SO VERY EXCITED TO HAVE A FULL
SLATE TODAY.
SO TODAY I WOULD LIKE TO TALK
ABOUT THE ACTIVITIES THAT
NCMRR HAS BEEN INVOLVED IN AND
SOME OF OUR COLLABORATIONS SINCE
WE LAST MET IN DECEMBER.
WE HAVE A LITTLE BIT OF DATA TO
SHOW YOU WHERE WE'RE LOOKING TO
SHOW THE VALUE OF THE WORK THAT
NCMRR SUPPORTS AS WELL AS SOME
SCIENTIFIC ADVANCES AGAIN
TOWARDS THAT END.
I DO NEED TO HAVE A CONVERSATION
WITH YOU ALL ABOUT THE RESEARCH
PLAN AND WHERE WE'RE GOING TO GO
FROM HERE SO THERE IS SOME
AUDIENCE PARTICIPATION NEEDED
TOWARDS THE END OF MY
PRESENTATION.
YOU'RE ON NOTICE FOR THAT.
SO THE FIRST THING IS THE RFA
THAT WE PUBLISHED, ACTUALLY THE
DAY WE LAST MET IN DECEMBER AND
THAT IS OUR CLINICIAN SCIENTIST
CAREER DEVELOPMENT PROGRAM, OUR
K12, WE HAD KIND OF SUN SET IT
FOR A LITTLE BIT.
WE HEARD FROM YOU ALL IN
PARTICULAR THAT THIS WAS AN
IMPORTANT NECESSARY PART TO
CAREER DEVELOPMENT IN THE FIELD,
A MECHANISM THAT WAS REALLY
APPRECIATED.
I AM SEEING A GRAY BAR OVER OVER
THE TITLE, ARE YOU ALL SEEING
THAT?
>> UNFORTUNATELY HA IS A BAR IN
TEAMS AND I AM TRYING TO GET RID
OF IT AND IT SHOULD BE GONE IN A
FEW MOMENTS.
>> APOLOGIES FOR THAT.
SO WE HAVE PUT OUT THAT FUNDING
OPPORTUNITY.
APPLICATIONS WERE DUE IN MARCH.
WE DID GET A SIGNIFICANT
RESPONSE TO THAT CALL FOR
APPLICATIONS AND I THINK
INDICATE THAT WAS A GOOD MOVE
FOR US, I WANT TO THANK RALPH
FOR HIS LEADERSHIP IN MOVING
THAT FORWARD, AGAIN, THIS IS
TARGETING CLINICIAN SCIENTISTS.
I HAVE PMNR DOCS, BUT REALLY ANY
DOCS THAT ARE INVOFFED IN
REHABILITATION ARE ELIGIBLE AS
WELL AS PHYSICAL AND
OCCUPATIONAL THERAPISTS.
THIS IS 1 OF THE NOFOs THAT IS
BEING TRANSITIONED FROM AN NICHD
REVIEW TO A CSR REVIEW, THAT
ALISOIN N JUST EXPLAINED BUT WE
DON'T HAVE THE DATE YET BUT WE
HAVE A CLES WATCH ON IT, OUR
REVIEW COLLEAGUES ARE KEEPING AN
EYE ON IT AND WE ARE CONFIDENT
THAT WE WILL GET THIS DONE IN
TIME IN ONLY A LITTLE BIT
DELAYED.
THE OTHER NOF O THAT WE HAVE HAD
OUT IS THE REIMAGINING OF THE
MEDICAL RESEARCH RESOURCE
CENTERS.
WE HAVE MOVED FROM THE P2 C TO
THE P50 MECHANISM, AGAIN THESE
CAME IN LAST YEAR.
WE DID HAVE ABOUT A 5 MONTH
DELAY IN THE REVIEW OF THOSE BUT
I AM VERY PLEASED TO SAY THE
REVIEW DID HAPPEN LAST WEEK.
WE ARE WORKING ON PAY PLANS
THOUGH I CANNOT TALK ABOUT THE
NEW SITES JUST YET BUT ABOUT WE
WILL BE TAKING A PAY PLAN TO
NICHD'S JUNE COUNCIL.
WE ARE VERY, VERY GRATEFUL TO
THE REVIEWERS WHO WERE PATIENT
WITH US AND THE APPLICANTS AS
WELL JOE BONNERA HAS DONE A
GREAT JOB WITH THIS, SO BIG
THANKS TO HIM.
GO BACK, SORRY AND WE HAVE MANY
PARTNERS IN THIS.
SO THIS IS 1 OF THE FUNDING
OPPORTUNITIES THAT GOES THROUGH
THE MEDICAL REHAB COORDINATING
COMMITTEE AND HAS INPUT FROM OUR
OTHER ICs, NINDS, NIBIB, NIDCD
AND NICCIH, AND AGAIN, THANK TO
YOU THEM.
NEXT SLIDE.
BUT I WOULD BE REALLY, REALLY
REMISS IF I DIDN'T ACKNOWLEDGE
THE OUTGOING CENTERS, THEY HAVE
DONE AN INCREDIBLE JOB OF
EDUCATING THE FIELD, OF SHOWING
THEIR EXPERTISE ASK PROVIDING
LEADERSHIP AND TRAINING
OPPORTUNITIES TO GROW THE
STRENGTH OF THE RESEARCH FIELD
AND REHABILITATION.
ABOUT A MONTH AGO, THEY HAD A
FAREWELL TOUR WHERE THEY TALKED
ABOUT THE OUTCOMES THEY WERE
ABLE TO ACHIEVE IN THEIR 5 YEAR
CYCLE, THEY FEATURED MANY OF THE
URINE PILOT AWARDEES OR TRAINEES
WHO HAD BEEN THROUGH THE CENTERS
AND IT WAS JUST VERY NICE TO SEE
KIND OF THE FRUIT OF THEIR LABOR
THEY ALL REMINDED US THAT THEY
ARE NOT DISAPPEARING, THEY ARE
STILL AROUND, THEY STILL HAVE
RESOURCES SO PLEASE, IF THEIR
EXPERTISE IS HELPFUL TO YOU,
PLEASE DON'T BE AFRAID TO REACH
OUT TO THEM AND A BIG THANKS TO
THE COORDINATING CENTER AT MUSC
WHO KIND OF ORGANIZED A LOT OF
THAT PARTICULARLY BROOK SEGAL,
THANK YOU.
OKAY.
ANOTHER THING THAT WE HAVE HAD
THE PLEASURE TO WORK ON SINCE
WE'VE LAST MET IN DECEMBER IS
OUR DISABILITY PRIZE CHALLENGE.
THIS IS A KIND OF JOINT EFFORT
AGAIN WITH NATIONAL EYE
INSTITUTE, DEAFNESS AND OTHER
COMMUNICATION DISORDER, NIAMS,
THE OFFICE OF THE DIRECTOR, AS
WELL AS OUR ACL COLLEAGUES IN
NIDLR, WE LAUNCHED THOSE PRIZE
CHALLENGE WHICH IS 2 PHASES.
THE FIRST PHASE WE LAUNCHED IN
AUGUST.
WE HAD A REALLY INCREDIBLE
RESPONSE IN NOVEMBER, OVER 120
APPLICATIONS FROM 33 STATES, D.
C. AND PUERTO RICO, I THINK AND
JUST -- IT WAS INCREDIBLY
VALUABLE TO SEE THE RESPONSE AND
THESE WERE ALL FROM COMMUNITY
GROUPS, SO WE'VE TALKED A LITTLE
BIT ABOUT THE IMPORTANCE OF
HEALTH DISPARITIES RESEARCH AND
REALLY WE ACKNOWLEDGE HOW
IMPORTANT COMMUNITY ENGAGEMENT
IS FOR THAT TYPE OF RESEARCH SO
WE WANTED TO REWARD THESE
COMMUNITY LED PROGRAMS THAT ARE
ALL WORKING TOWARDS THE GOALS OF
IMPROVING HEALTH FOR AMERICANS.
SO WE AWARDED OUR PHASE 1
WINNERS, SO LIKE THE ENDOTUNNEL
FUNNEL YOU SAW FROM ALISO'S
SLIDE WE'VE NARROWED THOSE FROM
120 DOWN TO 8 AND THOSE 8 ARE
CURRENTLY COMPETING AND WE WILL
HOPE TO HAVE OUR TOP WINNERS
NEXT JANUARY.
THE MIX OF WINNERS COVERS ALL
DISABILITY TYPES AS WELL AS
RESOURCES SO WE HAVE SOME
PREVENTIVE CARE, DENTAL FOR
EXAMPLE, WE HAVE ENGAGEMENT OF
NURSES, PARTICULARLY NURSES WITH
DISABILITIES AND NURSING
CURRICULUM, WE HAVE PEER SUPPORT
GROUPS FOR APHASIA, FISCAL
ACTIVITY, ACCESS TO
REHABILITATION AS WELL AS ACCESS
TO ASSISTIVE TECHNOLOGIES, LIKE
PREVENTATIVE AND ALTERNATIVE
COMMUNICATION DEVICES SO TO JUST
GIVE YOU AN OVERVIEW OF THE
TYPES OF PROJECTS THAT ARE
MOVING FORWARD, SO VERY PLEASED,
VERY EXCITED ABOUT THIS AND MORE
TO COME.
UNFORTUNATELY, WE DID HAVE TO
POSTPONE OUR REHAB CONFERENCE.
AND WE HAD BEEN -- WE HAD BEEN
WAITING ON MORE INFORMATION
ABOUT YOU KNOW HOW WE MIGHT GO
FORWARD WITH THIS AND WE HAVE
GOTTEN SOME RESEARCH IN THE LAST
FEW WEEKS, SO I AM HOPEFUL THAT
WE WILL BE RESCHEDULING THIS
BEFORE THE END OF THE FISCAL
YEAR WE DO NOT HAVE THE NEW DATE
SET YET AND WE WILL HAVE TO MAKE
ARK JUST WANTS TO THE AGENDA AND
THE FORMAT, BUT WE ARE GRATEFUL
TO THE MEMBERS OF THIS BOARD WHO
HELPED PLAN THIS EVENT AS WELL
AS THE KIND OF INTERNAL PLANNING
COMMITTEES WHO HAD PREPARED A
REALLY WONDERFUL AGENDA AND WE
WILL DO OUR BEST TO KEEP THAT AS
INTACT AS POSSIBLE BUT NOTING
THAT WE WILL LIKELY HAVE TO DO A
VIRTUAL FORMAT INSTEAD OF AN
IN-PERSON AND AS SOON AS WE CAN
GET THAT NEW DATE SETTLED, WE
WILL LET YOU ALL KNOW BUT AGAIN
APOLOGIES THAT WE DID HAVE TO
POSTPONE.
AT OUR LAST MEETING WE TALKED
ABOUT THE DISABILITY HEALTH
RESEARCH COORDINATING COMMITTEE.
ONE OF THE NEW LEADERSHIP
CHANGES AT NIH THAT ALISON
DIDN'T MENTION WAS THE
APPOINTMENT OF NICOLE CLIEN AS
THE ACTING DEPUTY DIRECTOR FOR
PROGRAM COORDINATING AND
STRATEGIC INITTIAIVE ITS.
ADAM IS HERE TODAY, KIND OF
REPRESENTING THE DPC PSI AND
THIS GROUP.
WE ARE STILL MEETING, WE ARE
STILL WORKING ON THE STRATEGIC
PLAN AND WE WERE ABLE TO PUT OUT
A REQUEST FOR INFORMATION IN
MIDDECEMBER.
THAT CLOSED IN MARCH ASK WE ARE
GOING THROUGH THOSE COMMENTS
NOW.
SO I THOUGHT YOU MIGHT HAVE
QUESTIONS ABOUT, IF THIS IS
STILL PROCEEDING, THERE HAVE
BEEN DELAYS BUT PLEASE KNOW THAT
WE ARE STILL WORKING ON THAT AND
ADAM CAN'T GET RID OF US.
OUR OUTREACH HAS BNT INN AS
EXTENSIVE AS USUAL BUT WE WERE
ALL ABLE TO PARTICIPATE IN
TIGER, WHICH WE ALL ENJOY, WE
ALL MEET WITH JUNIOR
INVESTIGATORS AND TALK TO THEM
ABOUT FEDERAL FUNDING
OPPORTUNITIES.
WE ALSO HOSTED A WEBINAR IN
JANUARY TARGETED AT OUR EARLY
CAREER RO3 APPLICANTS AND THIS
SPURRED OUT OF AN ANALYSIS THAT
OUR PROGRAM ANALYSTS AT THE TIME
HAD DONE WORKING WITH PROGRAM
OFFICERS, AND WORKING WITH
REVIEW OFFICERS TO IDENTIFY KIND
OF COMMON MISTAKES, COMMON PIT
FALLS, AND TO WORK WITH THEM
BEFORE PIs PUT IN THEIR
APPLICATIONS TO KIND OF HEAD
SOME OF THOSE OFF.
SO THAT HAS BEEN POSTED AND WOE
HOPE THAT IT WILL BE HELPFUL TO
THE COMMUNITY AND THEN FINALLY I
HAD THE OPPORTUNITY TO
PARTICIPATE IN OUR LURCH AND
LEARN ON REHABILITATION RESEARCH
FOR 8-10 CONGRESSIONAL STAFFERS
A FEW WEEKS AGO.
A VIRTUAL MEETING AND I THINK AS
THESE OPPORTUNITIES ARE
PRESENTED, YOU KNOW WE ARE DOING
OUR BEST TO SHOW THAT THE VALUE
AND THE GREAT WORK THAT YOU ALL
DO.
AND THE LAST UPDATE ON OUR
ACTIVITIES IS CONGRATULATIONS.
WE HAD A P-CASE AWARDEE THAT IS
THE PRESIDENTIAL EARLY CAREER
AWARD FOR SCIENTISTS AND
ENGINEERS AND I WOULD SAY THAT
NCMRR DOES A REALLY GOOD JOB AT
WINNING THESE.
WE'RE QUITE PLEASED WITH OUR
TRACK RECORD, SO EVERY FEW YEARS
PROGRAM STAFF CAN NOMINATE
PEOPLE FOR THIS AWARD.
SEVERAL YEARS AGO THAT WE PUT
THIS NOMINATION FORWARD BUT IT
HAPPENED IN JANUARY.
WE WERE ALERTED THAT BROOK ANN
SLAVENS WHO IS A BEO MEDICAL
ENGINEER HAD BEEN GIVEN THIS
PRESTIGIOUS AWARD AND IT WAS
BASED ON HER RO-1 AWARD WITH
HUSBAND ON PREDICTING SHOULDER
INJURY FOR DISEASE PREVENTION IN
CHILDREN AND ADULTS WITH FINE
SALIVA--SALIVA CORD INJURY AND
BROOK HAS BEEN KIND ENOUGH TO
OFFER AND GIVE US INTERNALLY AT
NICHD A TALK THIS WEEK SO WE CAN
HEAR DIRECTLY FROM HER ABOUT HOW
SUCCESSFUL THIS PROJECT HAS
BEEN.
SHE JOINED REALLY GOOD COMPANY
ENCLOUDING SOME FORMER BOARD
MEMBERS.
WE WERE TRYING TO REMEMBER ALL
OF OUR WINNERS SO I WILL NOT
NAME THEM ALL, BUT WE ARE QUITE
PLEASED HOW WELL NMRR DOES FOR
COMPETING FOR THIS NATIONAL
AWARD.
AND WE'VE BEEN LOOKING AT THE
IMPACT OF OUR WORK AND 1 THING
WE LOOKED AT IS HOW
NCMRR PUBLICATIONS COMPARE TO
COMPARE TO OTHER AND THIS
ANALYSIS DEVELOPED A CITATION
RELATIVE CITATION RATIO WHICH IS
THE METRIC FOR NORMALIZING AN
ARTICLE'S INFLUENCE OVERTIME
BENCHMARKED BY THE FIELD AND HOW
LONG THAT PUBLICATION HAS BEEN
AVAILABLE.
AND SO WHAT WE DID IS LOOK AT
PUBLICATIONS THAT CAME OUT IN
THE YEARS 2019 THROUGH THE EARLY
PART OF 2025.
OBVIOUSLY 2025 NOT COMPLETE
HERE.
THAT WERE ASSOCIATED WITH AN
NCMRR GRANT, SO THE FUNDING
COULDN'T HAVE HAPPENED AT ANY
TIME PREVIOUS OR CONCURRENT BUT
THIS IS THE TIME PERIOD WHEN THE
PUBLICATIONS WERE OUT WE HAD
OVER 4700 PUBLICATIONS.
MOST OF THEM WERE AVAILABLE IN
THE ICITE SYSTEM.
THERE WAS AN SKEWED
DISTRIBUTION, A FEW NUMBER OF
HIGHLY INFLUENTIAL PUBLICATIONS
SO WHAT WE DID WAS KIND OF
MANUALLY CHECK THE TOP 50
PUBLICATIONS AND MAKE SURE THEY
WERE CORRECTLY IDENTIFIED AS
PART OF THE NCMRR'S PORTFOLIO AS
WELL AS BEING REHABILITATION
RELATED BECAUSE REMEMBER THIS IS
BASED ON WHAT AN AUTHOR REPORTS
IN PUB MED.
SO WHEN WE LOOKED LOOKED AT THE
RELATIVE RATIOS WE FOUND WE HAD
A MEAN OF 1.84.
REMEMBER 1 IS JUST THE NORMS SO
ANYTHING HIGHER THAT KNOW THAT
IS GOOD.
THAT SET OF PUBLICATIONS ALSO
HAD A MEDIAN OVER 1, THE
WEIGHTED RCR IS A THIRD WAY TO
REFLECT AND BASICALLY IF THAT
NUMBER IS GREATER THAN THE
NUMBER OF PUBLICATIONS, THEN IT
IS CONSIDERED A SIGNIFICANT SET
OF PUBLICATIONS.
SO THE NEXT THING I WOULD LIKE
TO TALK ABOUT, -- NOT THE LAST
THING -- BUT IF I COULD REMIND
PEOPLE TO MUTE THEMSELVES I'M
GETTING A LITTLE BIT OF
FEEDBACK.
WE WILL HIT JUST A COUPLE
SCIENCE ADVANCES SO THE FIRST
THING I WANT TO TELL YOU ALL
ABOUT IS 1 OF THE PRODUCTS OF 1
OF THOSE ACROSS NIH
COLLABORATIONS THAT ALISON
MENTIONED THAT IS THE NIH
BLUEPRINT FOR NEUROSCIENCE.
SO I THINK MANY OF YOU ARE
FAMILIAR WITH THE TOOL BOX WHICH
IS A SET OF DIGITAL ASSESSMENTS
FOR COGNITION, MOTOR, SENSATION,
EMOTION, THAT NIH HAS DEVELOPED
AND ADVERTISED FOR QUITE A
NUMBER OF YEARS, THEY ARE VALID,
RELIABLE, NORM REFERENCED, FOR
PEOPLE ACROSS THE LIFE SPAN FROM
3 YEARS TO 85 YEARS.
THERE WAS A WORKSHOP LAST YEAR,
KIND OF DELVING INTO THE TOOL
BOX AND I WOULD ENCOURAGE YOU TO
TAKE A LOOK AT THAT IF THIS IS
SOMETHING NEW TO YOU.
AND THERE ARE OVER 50
ASSESSMENTS.
BUT YOU NOTICE, I SAID THAT IT'S
GOOD FOR AGES 3 AND UP, SO,
NICHD PARTICULARLY LED BY OUR
CHILD DEVELOPMENT BEHAVIOR
BRANCH HAD ISSUED A CONTRACT IN
COLLABORATION WITH THE N IH
BLUEPRINT TO DEVELOP A BABY TOOL
BOX FOR CHILDREN AND INFANTS
AGES 1-FROM--INTEGRATION MONTHS,
IT'S AVAILABLE BOTH IN ENGLISH
AND SPANISH AND THAT TOOL KIT
HAS RECENTLY BEEN RELIESED SO IF
I ARE WORKING WITH THOSE YOUNGER
AGED CHILDREN WE WOULD ENCOURAGE
YOU TO TAKE A A LOOK AT THAT D
IT'S BEEN A REALLY NICE
COLLABORATION WITH THE REST OF
NICHD AND NIH WITH THEIR REHAB
CENTER.
AND THEN THE OTHER SCIENTIFIC
ADVANCE I WANTED TO TALK ABOUT
BRIEFLY WAS THE FDA APPROVAL OF
THE RPX DEVICE FROM ONWARD
MEDICAL, I THINK MANY OF YOU
PARTICULARLY IN THE SPINAL CORD
INJURY RESEARCH REALM ARE
PROBABLY FAMILIAR WITH THIS
DEVICE.
IT'S A NONINVASIVE SPINAL CORD
STIMULATOR AND THIS WAS AN
INDUSTRY SUPPORTED TRIAL.
PIVOTAL TRIAL, 60 PATIENTS IN 14
SITES SO IT'S ALSO INTERNATIONAL
COLLABORATION WHERE ELECTRODES
ARE PLACED ON THE SURFACE OF THE
SKIN ABOVE AND BELOW THE INJURY,
THE LEVEL OF THE INJURY.
THE PAPER FOR THIS PIVOTAL STUDY
CAME OUT LAST YEAR IN NATURE
MEDICINE.
SO THIS IS NOT AN EPIDIEWRAL
STIMULATION, IT'S NOT IMPLANTED
AND IT IS OFTEN NOT A FUNCTIONAL
ELECTRICAL STIMULATOR THAT
DIRECTLY CONTROLS THE MUSCLE
RATHER IT GETS THE BASE LINE OF
ACTIVITY CLOSER -- SORRY, IT
GETS THE SPINAL CORD PRIMED TO
MORE EASILY ACTIVATE AT THE
VOLITIONAL INTENT OF THE USER.
SO THE TARGET GOAL IS AT LEAST
50% PATIENTS HAVING IMPROVEMENT
COMPARED TO BASE LINE WHICH DID
INCLUDE REHABILITATION ALONE SO
YOU CAN SEE THERE THESE KIND OF
BASE LINE PERIODS WHERE THE
SUBJECTS BOTH IN MOTOR FUNCTION
AND SENSORY FUNCTION WERE FAIRLY
CONSISTENT.
THEN THE STIMULATOR WAS TURNED
ON, THEY CONTINUED TO HAVE
REHABILITATION WITH THE
STIMULATION, REHABILITATION WAS
IMPORTANT TO THE OUTCOMES AND
THEN YOU SEE THESE KIND OF
REALLY DRASTIC INCREASES BOTH IN
MOTOR FUNCTION SCALE AT THE TOP
AS WELL AS THE SENSORY FUNCTION
AT THE BOTTOM.
IN ADDITION TO THESE PRIMARY
OUTCOMES PARTICIPANTS REPORTED
IMPROVEMENTS IN MUSCLE SPASM,
SLEEP METRICS, I AM PRESENTING
THIS TODAY BECAUSE I THINK IT
REPRESENTS A GOOD EXAMPLE OF THE
ECOSYSTEM THAT WE HAVE DEVELOPED
IN THIS COUNTRY FOR SUPPORTING
BIOMEDICAL RESEARCH.
SO WE WOULD NOT BE HERE WITH
THIS PIVOTAL TRIAL WITH THIS
DEVICE COMPANY IF NOT FOR THE
DECADES OF BASIC RESEARCH INTO
OW ACTION POTENTIALS ARE
DISCHARGED AND HOW DOSE
DEPENDENT PLASTICITY IS USE
DEPENDENT PLASTICITY OCCURS.
THE ROLE OF ABOUT I O
COMPATIBILITY SO THE SUPPORT,
NSF, IN TRAINING THE PEOPLE WHO
PERFORMED THESE STUDIES, THE
EARLY FEASIBILITY STUDIES THAT
GO INTO SOMETHING LIKE THIS, SO
THE ROLE OF FDA AND APPROVING
THE DEVICE SO THAT WE'RE ALL
KIND OF PART OF THIS ECOSYSTEM
THAT IS WORKING TOGETHER TO HELP
THE HEALTH AND FUNCTION AND WELL
BEING OF AMERICANS.
AND I ASSURE YOU CHET DOES A
MUCH BETTER JOB AT THIS
PRESENTATION AND WE HOPE TO GET
HIM AT THE RESCHEDULED REHAB
CONFERENCE.
OKAY, SO THE LAST THING THAT I
NEED TO TALK TO YOU ALL ABOUT IS
THE RESEARCH PLAN.
WHEN WE MET IN DECEMBER I LAID
OUT THIS VERY NICE TIMELINE
WHERE WE HIGHLIGHTED THE WORK
WE'VE DONE UP UNTO THAT POINT
WORKING WITH WORKING GROUPS OF
THIS COUNCIL, MEDICAL REHAB
COORDINATING COMMITTEE, SOME OF
THE EARLY FEEDBACK I HAD GOTTEN
FROM THE AMERICAN CONGRESS OF
REHAB MEDICINE, AND I HAD
PLANNED TO PUBLISH A REQUEST FOR
INFORMATION TO DO MORE OUTREACH
AND THEN I WAS GOING TO COME TO
YOU TODAY AND SAY, HERE IS --
HERE ARE OUR FINAL THEMES AND TO
ASK FOR YOUR APPROVAL AND THEN I
WOULD KIND OF WORK THROUGH THAT
WITH THE TEAM AT NCMRR AND NICHD
AND ACROSS NIH REALLY BECAUSE
THIS IS NOT THE NCMRR RESEARCH
PLAN, IT IS THE NIH RESEARCH
PLAN.
SO I CANNOT DO THAT TODAY.
WE HAVE NOT PUBLISHED THE
REQUEST FOR INFORMATION.
I DO NOT HAVE THAT FEEDBACK THAT
I TOLD YOU ALL THAT I WOULD
BRING TO YOU.
AS A REMINDER THESE WERE THE
PROPOSED THEMES WE HAD ALL
DISCUSSED AND TALKED THROUGH
OVER THE LAST YEAR SO THE
IMPORTANCE OF BAIVENG AND
MECHANISTICS STUDIES, SOCIAL
DEDERMINANTS OF HEALTH,
REHABILITATIVE AND ASSISTIVE
TECHNOLOGY, IMPLEMENTATION
RESEARCH AND TRAINING CAREER
DEVELOPMENT AND INFRASTRUCTURE.
SO MY QUESTION TO YOU ALL IS:
GIVEN THE KIND OF TRANSITION
PERIOD THAT WE'RE GOING THROUGH,
I DO NOT HAVE AN UPDATED
TIMELINE FOR WHEN I MIGHT GET
YOU THE INFORMATION THAT I HAD
INDICATED WAS IMPORTANT TO US.
AND I STILL THINK IS IMPORTANT
TO GET FEEDBACK FROM THE FIELD.
SO THAT BEING SAID, ARE YOU
COMFORTABLE IN APPROVING THESE
THEMES WITHOUT THAT FEEDBACK AND
ALLOWING US TO GO FORWARD WITH
THE CREATION OF THAT RESEARCH
PLAN OR WOULD YOU LIKE TO JUST
PUSH THIS OFF UNTIL THE TIME
THAT I CAN BRING YOU THAT
INFORMATION, THAT FEEDBACK FROM
THE FIELD AND THAT BUY-IN?
I DON'T HAVE A GOOD FEEL FOR
WHAT THAT NEW TIMELINE MIGHT BE
AND SOME OF THE PEOPLE THAT WERE
HELPING WITH THIS ARE NOT PART
OF THE AGENCY ANYMORE.
SO THERE IS ALSO SOME
UNCERTAINTIES.
SO THIS IS WHERE I OPEN IT UP TO
GET YOUR FEEDBACK, I SEE TRISH'S
HAND AND THEN I SAW A QUESTION
IN THE CHAT WHICH I WILL LOOK
AT, TOO.
>> I CAN WAIT, THERESA IF YOU
WANT TO DO THE QUESTION FIRST.
>> SO YES, TIFFANY WE DID HAVE A
PRESENTATION ON THESE.
I KNOW YOU HAD TO -- AT THE
DECEMBER 2024 MEETING.
IT MIGHT HAVE BEEN ON DAY 2 WHEN
YOU HAD ALREADY STEPPED OUT.
TRISH, YOUMENT TO ASK YOUR
QUESTION?
>> YEAH, WELL, MORE OF A
QUESTION/STATEMENT AND AS AN
ADHOC MEMBER I'M VERY GRATEFUL
TO BE PART OF YOUR GROUP AND
THIS NIH GROUP AND ALSO BEING A
FEDERAL EMPLOYEE WHO IS ALSO IN
CHARGE OF CONDUCTING A RESEARCH
PROGRAM AND KEEPING THINGS GOING
IN A FORWARD MANNER, I WOULD
JUST PROMOTE THE IDEA THAT YOU,
YOUR GROUP, NCMRR NOT PUT
THEMSELVES IN A STATIC STATE BUT
BE IN AS FORWARD MOVING STATE AS
YOU CAN WITH THE INFORMATION YOU
HAVE FROM PEOPLE WHO'VE GIVEN
YOU INPUT THUS FAR AND OF COURSE
HAVING A REALLY GOOD
UNDERSTANDING OF THE FIELD AND
THE NEEDS OF THE COMMUNITY AT
LARGE THAT YOU FRANKLY, YOU KNOW
NOT BE STATIC BUT BE AS FORWARD
MOVING AS YOU CAN AND AS COURSE
CORRECTIONS ARE NEEDED, YOU MAKE
COURSE CORRECTIONS BECAUSE WE DO
THAT, WE DO THAT ANYWAY.
WE DO THAT ANYWAY.
SO JUST THAT'S MY THOUGHTS FOR
YOU AND YOUR GROUP.
THANK YOU.
>> THANK YOU.
LUIS?
>> HEY, THERESA, THIS KIND OF IS
SORT OF SECOND I THINK WHAT
TRISH SAID, I KIND OF AGREE, I
MEAN I THINK IT'S REASONABLE TO
YOU KNOW PUT FORWARD SOME, YOU
KNOW, MAYBE A PRELIMINARY
PRIORITIES OR SOME SORT OF
LANGUAGE TO MAKE THIS VERY CLEAR
THAT THIS WAS KIND OF DRIVEN BY
THE ADVISORY BOARD BUT YOU KNOW
CERTAINLY DOWN THE LINE THERE
COULD BE CHANGES TO SCOPE,
THINGS LIKE THAT, BUT I WOULD
NOT WANT TO HAVE MOMENTUM
STALLED ON GETTING THE IMPORTANT
WORK DONE AND STARTING TO MAKE
SOME STRATEGIC PRIORITIES
AACCOMPLISHED.
IT'S TOO IMPORTANT.
I MEAN WE HAVE SO MANY THINGSEE
RELATED TO THE RESEARCH, THINGS
WE'VE ALREADY SEEN AND HEARD
FROM SO MANY THINGS THAT ARE
BEING PRIORITIZED, THAT NEED TO
BE PRIORITIZED THAT ARE ON THIS
LIST THAT YOU PUT UP JUST A
LITTLE BIT AGO, I WANT TO MAKE
SURE THAT AT LEAST SOME
STRATEGIC THINKING CAN BE
PLANNED AND INITIATED AROUND
THESE THINGS AND MAYBE HAVE THEM
MODIFIED A LITTLE BIT DOWN THE
LINE BUT THIS IS A GOOD
CONVERSATION STARTER I THINK AND
I WOULD WHOLE HEARTEDLY SUPPORT
KIND OF MOVING THIS FORWARD
MYSELF.
>> THANK YOU.
TIFFANY?
I THINK YOU'RE STILL MUTED.
>> HI THIS, IS TIFFANY, I WANTED
TO ECHO WHAT OTHER SPEAKER SAID
ABOUT CONTINUING TO MOVE FORWARD
WITH THE AGENDA AND I WAS ALSO
CURIOUS, YOU KNOW I APPRECIATED
KIND OF THE SLIDES YOU SHARED
AROUND SOME OF THE PROGRESS THAT
HAS BEEN MADE WITH WITH THIS AND
THE ECOSYSTEM THAT UPHOLDS AND I
WAS CURIOUS IF THERE'S ANYTHING
THAT WE AS ADVISORY BOARD
MEMBERS CAN DO TO HELP REALLY
AMPLIFY THAT WORK AND SOME OF
THOSE WINS THAT HAVE BEEN, YOU
KNOW APPROVED BY THE FDA AND
OTHER THINGS LIKE THAT TO JUST
LED TO THE IMPORTANCE OF WHAT
YOU ALL ARE DOING?
>> THANK YOU FOR THE QUESTION
TIFFANY, SO OF COURSE YOU ALL
ARE AS PRIVATE CITIZEN BUT NOT
THE DAYS THAT YOUR SPECIAL
GOVERNMENT EMPLOYEES ARE ABLE TO
TALK TO YOUR REPRESENTATIVES
ABOUT WHAT YOU THINK IS
IMPORTANT DIRECTIONS FOR THE
LEGISLATION TO MOVE IN AND YOU
CAN TALK ABOUT YOU KNOW HOW NIH
AND FEDERALLY SUPPORTED RESEARCH
HAS SUPPORTED THE AMERICAN
PEOPLE.
>> GOOD MORNING, THANK YOU FOR
YOUR REPORT.
I WOULD JUST LIKE TO SECOND MY
OTHER COLLEAGUES ABOUT THE NEED
TO MOVE FORWARD WITH THIS
RESEARCH PLAN.
WE SEE 2 WAYS, 1 IS TECHNOLOGY
CONVERGENCE, YOU KNOW THINGS
GOING REALLY FAST, AI,
CONNECTIVITY, BCI AND OTHERS,
BUT ALSO SCIENCE CONVERGES, SO
THIS IS MOVING SO FAST THAT IT
WOULD BE REALLY CRITICAL TO MOVE
FORWARD.
SO TAKE THAT FROM ME.
I WOULD ALSO LIKE TO SECOND ON
YOUR COMMENT ON THE STUDY ON
NONINVASIVE SPINAL CORD
STIMULATION, I MEAN THIS IS
REALLY AN OUTCOME OF YEARS OF
NIH SUPPORT, YOU KNOW TO
SCIENCE, WE HAVE COMMUNITIES AND
I THINK, ALSO VERY HAPPY THAT
THIS IS A NONINVASIVE STRATEGY
BECAUSE WE NEED SOLUTIONS.
SO WE TEND TO SPEND A LOT OF
TIME TALKING ABOUT INVASIVE
SOLUTIONS BUT YOU KNOW THESE ARE
EQUALLY IMPORTANT SO I'M HAPPY
YOU SELECTED THAT STUDY AS AN
EXAMPLE OF NIH, THANK YOU.
>> THANK YOU.
CATHY?
>> HI, --I WANTED TO SECOND WHAT
EVERYBODY SAID SO FAR, I
APPRECIATE THE LIST, I THINK IT
IS THE RIGHT LIST TO MOVE
FORWARD, I WANTED TO EXPRESS --
JUST, I WANTED TO I GUESS
PROVIDE SOME COMMENTS ON CLARITY
AROUND BASIC AND MECHANISTIC
STUDIES AND I AGREE, BOB, THAT
THESE ARE SUPER IMPORTANT, HE
WROTE A COMMENT ABOUT THE
IMPORTANCE OF BASIC MECHANISMS
BUT I AGREE WITH THAT, I AM NOT
DISAGREEING BUT I THINK WE NEED
TO BE SURE TO PRESENT THIS IN A
WAY THAT IS MEANT TO GET AT
REHABILITATION SOME WAY, RIGHT?
SO IT'S NOT JUST GOING TO BE
BASIC MECHANISMS FOR THE
DEVELOPMENT OF MEDICATIONS FOR
EXAMPLE, THAT THE GOAL HERE IS
REALLY TO STICK WITH THIS
REHABILITATION THEME, IS THAT
TRUE?
>> YEAH, SO THOSE ARE VERY HIGH
LEVEL BUT I THINK THE TEXT
UNDERNEATH THAT WAS REALLY
IMPORTANT SO ALISON MENTIONED
BACP A C, SO THE IMPORTANCE OF
DEEP PHENOTYPING SO WE CAN
IDENTIFYING WHICH PATIENTS WILL
BE GOOD FOR THE RIGHT
INTERVENTIONS.
SO KIND OF THAT UNDERLYING MORE
MECHANISTIC WORK IS A WAY TO GET
AT THAT.
>> OKAY, PERFECT.
THAT'S GREAT.
I WANT TO BE SURE THAT I WAS
CLEAR ON THAT AND I APPRECIATE
ALL THE WORK YOU'VE DONE AND
GIVEN THE CIRCUMSTANCES, I AGREE
WE NEED TO KEEP THINGS MOVING
FORWARD AS MUCH AS POSSIBLE.
>> OKAY, SO IF THERE ARE NO MORE
QUESTIONS, OR COMMENTS, SO WHAT
I'M HEARING IS THAT YOU ALL ARE
OKAY WITH ENDORSING THE THEMES
THAT WE HAVE COME UP WITH BOTH
COLLABORATIVELY AND FROM
FEEDBACK FROM THE COMMUNITY EVEN
THOUGH IT'S NOT QUITE THE SAME
LEVEL OF FEEDBACK AS WE HAD
HOPED.
SO BARBARA WOULD YOU MIND
CALLING A VOTE TO ENDORSE THE
THEMES OF THE 2026 NIH RESEARCH
PLAN FOR REHABILITATION.
>> SO, DO WE NEED A MOTION OR --
>> YEAH, WE NEED A MOTION.
>> CAN SOMEONE MAKE A MOTION TO
ENDORSE THE THEMES FOR THE
REHABILITATION RESEARCH?
>> I MAKE A MOTION TO ENDORSE
THESE.
>> SECOND?
>> SECOND.
>> SECOND,.
>> ALL IN FAVOR PLEASE RAISE
YOUR HANDS?
OKAY, I THINK WE GOT EVERYBODY.
THANK YOU ALL.
SO I WILL TAKE THIS BACK, AGAIN,
TO THE GROUP AND THE MEDICAL
REHAB COORDINATING COMMITTEE AT
NIH AND WE WILL CONTINUE TO MOVE
THIS FORWARD.
WE WILL TRY TO GET THAT RFI OUT
SO WE DO HAVE OPPORTUNITY FOR
PUBLIC INPUT BUT I'M GRATEFUL WE
CAN KIND OF CONTINUE THE WAY WE
WERE GOING.
RATHER THAN WAIT FOR AN UNKNOWN
LENGTH OF TIME.
>> STAR WORK THERESA.
>> THANK YOU.
SO I CAN OPEN IT UP FOR ANY
OTHER QUESTIONS FROM THE GROUP?
MICHELLE?
>> MOY QUESTION WASN'T UPDATED,
I THINK I DIDN'T PUT DOWN MY
HAND FROM THE VOTE.
>> ALL RIGHT.
HOW ABOUT BOB?
SMRKS SORRY ABOUT THAT.
THAT WAS MY OLD HAND.
I JUST WANTED TO INTEGRATE WHAT
CATHY AND I BOTH SAID, I THINK
THAT THERE'S A HISTORY FOR
DECADES OF NCMRR INVESTING IN
BASIC SCIENCE THAT IS TARGETED
TO UNDERSTANDING THE MECHANISMS
THAT CAN UNDERLIE THIS FUNCTION
IN ORDER TO DEVELOP PATIENT
SPECIFIC AND DYSFUNCTION
SPECIFIC INTERVENTIONS THAT ARE
MORE SPECIFIC THAN WHAT WE ARE
USED TO DOING IN THE PAST FOR
REHABILITATION, BUT ANYWAY, MY
HAND WAS UP BY MISTAKE NNOW I
DID PUT UP MY HAND DELIBERATELY.
I MENTIONED FOR THE MR3, YOU
KNOW A LOT OF THE MEDICAL REHAB
CENTERS THAT SOME OF THEM WERE
LEAVING, WHICH WERE THE 1S THAT
WERE NO LONGER GOING TO BE
QUOTE-UNQUOTE FUNDED OR
OFFICIALLY PART OF THE NETWORK
THAT WOULD STILL EXIST?
>> SO WE DON'T HAVE THE NEW SET
OF P50S YET, SO WE'RE STILL
GOING THROUGH THAT PROFESS, BUT
BECAUSE WE CHANGED MECHANISMS, I
CAN SAY THAT ALL THE P2 Cs ARE
ENDING AND THEIR PROJECT PERIODS
END OVER THE SUMMER AND WE WILL
HAVE KIND OF THIS NEW P50
STRUCTURE THAT STARTS OFF
HOPEFULLY BY THE END OF SUMMER.
>> OKAY, SO EVERYTHING THAT WAS
EXISTING IS KIND OF
TRANSITIONING TO THIS NEW
NETWORK?
OKAY, THAT WASN'T CLEAR.
I GOT IT THEN.
THE OTHER QUESTION I HAD WAS, I
KNOW ALISON HAD MENTIONED THERE
IS NOW A NEW CENTRALIZED GRANTS
WOULD BE UNDER THIS CENTRALIZED
REVIEW AND OTHER GRANDS WILL
STAY UNDER THE AGENCY REVIEW, I
JUST ACTUALLY MEANT TO ASK WHAT
ARE THE PROs AND CONS OF THAT
JUST IF YOU COULD YOU KNOW
ESPECIALLY FOR NICHD, WHAT DOES
THAT MEAN IN TERMS OF WHAT'S
GOOD ABOUT THAT AND WHAT'S
POTENTIALLY CHALLENGING ABOUT
THAT, JUST CURIOUS.
>> SO JUST TO CLARIFY, THE WAY
WE USED TO DO IT WAS ABOUT
75-80% OF GRANTS WERE DONE AT
THE CENTER FOR SCIENTIFIC REVIEW
AND 25% OF THE REVIEWS WERE DONE
AT THE INSTITUTE.
SAME PROCEDURES, STILL RUN BY
SROs, THE SAME QUALITY OF
REVIEW.
NOW, EVERYTHING WILL BE DONE,
ALL THE REVIEWS WILL BE MANAGED
BY THE TRUSTEES FOR SCIENTIFIC
REVIEW AND THAT TRANSITION IS
HAPPENING FOR THE APPLICATIONS
THAT ARE REVIEWED THIS SUMMER.
OKAY?
>> OH, OKAY.
>> SO, I MEAN, WE'RE STILL KIND
OF WORKING THROUGH THE
CHALLENGES THAT IT PRESENTS.
WHAT ALISON MENTIONED IS THAT
THE PEOPLE, THE SROs WE HAVE
BEEN WORKING WITH FOR MANY, MANY
YEARS MOST OF THEM ARE
TRANSITIONING WITH THOSE GRANTS.
SO IT'S THE SAME PEOPLE THAT WE
AND WORK WITH, KIND OF JUST
MOVING INTO A DIFFERENT PART OF
NIH.
SO WE'RE YOU KNOW HOPEFUL WE
WILL CONTINUE TO HAVE THOSE
STRONG RELATIONSHIPS AND YOU
KNOW I'M SURE THERE WILL BE SOME
BUMPS IN THE ROAD AS WE
TRANSITION BUT WE'RE ALL
DEDICATED TO HAVING GOOD REVIEWS
AND TIMELY REVIEWS.
NYEAH, AND MICHELLE, I WILL ADD,
NONI THE DIRECTOR FOR THE
SCIENTIFIC VERMEN INFECTED VIEW
HAS BEEN COMMUNICATING OVER TIME
WITH US ABOUT THIS.
THE THING I HEARD FROM THE
COMMUNITY IS MAKING SURE WE
STILL HAVE THE LEVEL OF
SPECIALTY WE NEED FOR THE AREAS
THAT WE WERE REVIEWING
PREVIOUSLY AND THEY HAVE BEEN
LOOKERRING AT THAT
CONSTITUTIONAL REVIEWS, THEY'RE
ALSO TRYING TO INSURE THAT THE
MEMBERSHIP OF THOSE REVIEW
PANELS IS ALSO CONSITUTED MOSTLY
IN WHOLE AS WE MOVE FORWARD AND
THEN THEY WILL BE REPORTING OUT,
NONI REGULARLY REPORTS OUT WHEN
I'M THERE ON PERFORMANCE METRICS
AS WELL AS THE TYPES OF PANELS
THAT THEY HAVE.
SO I THINK WE WILL CONTINUE
UPDATES ON THAT SO JUST TO
REASSURE YOU ALL THAT THIS IS
SOMETHING WE ARE ACTIVELY
WORKING ON WITH THEM.
>> OKAY, THANK YOU.
>> AL?
>> IF I MAY, I WANT TO REINFORCE
2-POINTS THAT CAME UP, THE
RESEARCH INFRASTRUCTURE PROGRAM
HAS BEEN A VERY SUCCESSFUL
PROGRAM, OUR COLLEAGUE AT OTHER
NIH INSTITUTES HAVE ALSO
BELIEVED IN AND CONTRIBUTED
WHICH IS A MAJOR THING AND A LOT
OF YOU HAVE ALSO BEEN PART OF
THAT PROGRAM IN VARIOUS LEVELS.
THIS IS A BIT OF A SHIFT TO MORE
CENTRALIZED RESEARCH AT
INSTITUTIONS, SO IT'S A BIT OF
AN UPSHIFT IN OW THE PROGRAM'S
GOING TO FUNCTION.
I SPEAK TO OUR COLLEAGUE JOE
BONNER ON THAT AND THEN THE
OTHER POINT THAT A LOT OF YOU,
COUPLE OF YOU MADE ABOUT
SUPPORTING THE RESEARCH PLAN,
AND BASIC RESEARCH, AGAIN IT'S A
CHANCE TO REINFORCE THIS IS A
RESEARCH PLAN ACROSS NIH.
AND A LOLT OF THAT BASIC
RESEARCH COMES FROM OUR
COLLEAGUES AND OTHER INSTITUTES
AND WE'VE BEEN LUCKY TO HAVE
SOME COLLEAGUES WHO VERY MUCH
BELIEVE IN REHAB RESEARCH, AND
YOU KNOW THE WAY WE'VE BEEN ABLE
TO FUNCTION AND REALLY SPREAD
OUR INFLUENCE IS BY HAVING OTHER
INSTITUTES, YOU KNOW SUPPORT
REHAB RESEARCH WITH WHEN THEY DO
BEST AND OUR CENTER TRIES TO
SUPPORT, YOU KNOW THOSE PROGRAMS
THAT ARE EVEN MORE FOCUSED ON
REHAB IMPAIRMENTS AND FUNCTION
AND DISABILITY.
SO THERE'S REALLY A VERY NICE
COOPERATION ACROSS INSTITUTES
AND AGAIN AS THERESA MENTIONED
THIS IS A PLAN FOR ALL OF NIH
AND REHAB IS A VERY TRANSIENT
ANT ISSUE, FORTUNATELY.
>> OKAY.
THANK YOU RALPH.
>> I BELIEVE FRANCISCO HAD A
COMMENT AS WELL.
>> OH, OKAY, SORRY, FRANCISCO?
>> NO, I WAS JUST WANTING TO IN
THE PAST AGREE WITH WHAT PEOPLE
WERE SAYING ABOUT THE PROPOSED
THEMES THAT YOU HAVE, I THINK
THEY WERE THOROUGHLY THROWN OUT,
SURE THEY COULD USE REFINING BUT
I THINK THE 90% THERE AND THANK
YOU FOR CONTINUING YOUR FORWARD
POSITIVE MOVEMENT WITH THIS.
>> THANK YOU.
DAWN?
>> THERESA AND EVERYBODY, THANK
YOU FOR ALL YOUR WORK, I
APOLOGIZE IS THIS TIME FOR ANY
QUESTIONS FOR YOU ARE ARE THEY
SPECIFIC?
I LOST MY INTERNET FOR 5 MINUTES
AND I WASN'T SURE I MISSED THAT.
MY QUESTION PERTAINS TO THE
CAREER DEVELOPMENT AWARDS THAT
JUST IF YOU HAVE ANY COMMENTS ON
THIS, ARE THEY CURRENTLY IN
EXISTENCE MOVING FORWARD,
ANYTHING YOU CAN SAY ABOUT
THOSE?
AND WHAT ROLE THEY MIGHT PLAY?
>> SO THE K12S OR ALL --
>> K23,.
>> I WAS THINKING MORE ALONG THE
INDIVIDUAL K23S, KO1s.
>> SO THE INDIVIDUAL Ks ARE
STILL ACTIVE.
WE STILL HAVE NOFOs OUT.
WE'RE STILL ACCEPTING
APPLICATIONS.
IF THERE IS -- WE SEE THEM AS AN
IMPORTANT PART OF THE LANDSCAPE.
YOU KNOW WE'VE SHOWN THAT IT'S
NOT JUST INSTITUTIONAL AND NOT
JUST INDIVIDUAL THAT WE REALLY
NEED THIS NETWORK OF SUPPORT.
>> WE SHOULD ADD THAT THE CAREER
DEVELOPMENT APPLICATION THAT
THERESA MENTIONED THOSE ARE THE
1S THAT WERE FORMALLY REVIEWED
AT THE INSTITUTE STUDY SECTIONS
AND THEY WILL NOW BE
TRANSITIONED OVER TO CSR, AND
HOPEFULLY, THE BROADER
COMMITTEES WILL SEE THE INHERENT
VALUE OF WHAT YOU FOLKS ARE
DOING SO IT MAY CHANGE A LITTLE
BIT HOW YOU HAVE TO MAKE YOUR
DIALOGUE AND EXPLAIN, BUT I
THINK WE'LL COMPETE VERY WELL
BECAUSE I THINK OUR RESEARCHERS
AND OUR CAREER FOLKS ARE DOING
SOME VERY IMPORTANT RESEARCH AD
WILL GET THE ATTENTION OF THOSE
PANELS.
>> ALL RIGHT, THANK YOU.
>> THAT'S A GOOD POINT, RALPH.
CSR HAS ALWAYS DONE FELLOWSHIPS.
SO IT WOULD NOT BE THAT MUCH OF
A CHANGE.
ANY OTHER QUESTIONS FOR THERESA?
OKAY, WELL, THANK YOU EVERYONE,
I THINK WE ARE AT TIME FOR A
BREAK.
>> SO WE WILL BE TAKING A BREAK
AND COMING BACK IN THE
AFTERNOON.
WE WILL SHIFT GEARS A BIT AND
HEARING 3 TALKS FROM SOME OF THE
BOARD MEMBERS, TALKS ABOUT THEIR
OWN ACTIVITIES BARBARA WILL TALK
ABOUT HER RESEARCH ON SPINAL
CORD PLASTICITY AND HER BROADER
REFLECTIONS ON MENTORING AND
DAWN'S GOING TO TALK ABOUT SOME
OF HER BEHAVIORIAL RESEARCH ON
CHRONIC PAIN AND FATIGUE, MAJOR
ISSUES ACROSS THE REHAB FIELD.
SHE'S GOING TO BE TALKING ABOUT
SPECIFICALLY IN THE CONTEXT OF
MULTIPLE SCLEROSIS, AND
FRANCISCO WILL TALK ABOUT SOME
OF HIS OWN WORK IN PUTTING
SENSORS IN MUSCLES AND UNSUNG
HEROS OF NEUROMUSCULAR CONTROL.
AND WE WILL FINISH OFF THE
ULTIMATE PART OF THE AFTERNOON
WILL BE BECAUSE IT'S A TIME OF
TRANSITIONING SEVERAL BOARD
MEMBERS WHO ARE FINERBING THEIR
TERMS SO WE WILL HEAR REMARKS
FROM A QUITE A FEW OF YOU.
WE HAVE A BIT MORE TRANSITION
THAN USUAL, JUST HAPPENS TO BE
THE WAY THE TERMS OF STACKED AND
FINALLY, AT THE VERY END, JUST
3:45 WE WILL LOOK FOR COMMENTS
FROM YOU FOR WHAT YOU WANT US TO
BRING UP AT FUTURE MEETINGS.
WE'VE HAD GREAT INPUT SO WE'RE
THINKING AHEAD TO THE AGENDA AND
TOPICS AND HOW WE GO ON TO
INFLUENCE AND ADVOCATE FROM
THERE.
SO WE'RE HERE COMING UP ALMOST
AT NOON EASTERN TIME.
YOU'LL HAVE UNTIL 1:00 P.M. EAST
COAST TIME TO TAKE A BREAK, TO
REFRESH, AND WE WILL SEE YOU
BACK.
THANK YOU.
[
OH, AND PLEASE STAY ONLINE, STAY
CONNECTED.
OKAY, I GUESS WE WILL GET
STARTED NOW.
I WOULD LIKE TO WELCOME
EVERYBODY BACK TO THE AFTERNOON
SESSION OF THE NATIONAL ADVISORY
BOARD ON MEDICAL AND
REHABILITATION RESEARCH FROM THE
U.S. DEPARTMENT OF HEALTH OF
HUMAN SERVICES, THE NIH AND THE
EEUNICE KENNEDY AND INSTITUTE OF
DEVELOPMENT.
WE WILL START OFF WITH RESEARCH
TALKS AND REFLECTIONS FROM OUR
OWN DR. BARBARA BREGMAN, AND
SHE'S CHIEF CHAIR OF THEA REHAB
MEDICINE DEPARTMENT AT
GEORGETOWN UNIVERSITY MEDICAL
CENTER, SHE'S ALSO DIRECTOR OF
RESEARCH AND EDUCATION AND
TRAINING IN THE
NEUROREHABILITATION AT NATIONAL
REHAB HOSPITAL.
SHE EARNED HER Ph.D. IN
ANATOMY AT THE MEDICAL COLLEGE
OF PENNSYLVANIA HER RESEARCH
INTERESTS INCLUDE CENTRAL
NERVOUS SYSTEM PLASTICITY.
RECOVERY OF FUNCTION AFTER
SPINAL CORD INJURY.
SPINAL CORD REGENERATION, AXONAL
REGENERATION AFTER SPINAL CORD
INJURY.
WE ALSO HAVE THE PLEASURE, THIS
GIVES ME A CHANCE TO ACKNOWLEDGE
THAT BARBARA HAS CHAIRED OUR
BOARD FOR THE LAST 2 YEARS AND
AGAIN, I THANK HER FOR THAT ROLE
AS L. SO NOW BARBARA I TURN IT
OVER TO YOU TO HEAR YOUR
COMMENTS AND REFLECTIONS ON
MENTORSHIP AND YOUR AREAS OF
RESEARCH.
>> THANKS SO MUCH RALPH.
AS I HAVE -- I HAVE NO
DISCLOSURES.
AND -- OOPS -- OH, AMY, HELP.
THAT GRAY BOX HAS RETURNED.
>> NO SLIDES.
>> SORRY JUST A SECOND.
>> THIS WORKED AT THE BREAK JUST
FINE.
SO WHILE THE SLIDES ARE COMING
BACK UP BE I WILL JUST SHARE AS
RALPH INDICATED I AM A PHYSICAL
THERAPIST AND NURSE SCIENTIST
WITH OVER 25 YEARS OF NIH
SUPPORTED RESEARCH IN CENTRAL
NERVOUS SYSTEM PLASTICITY AND
RECOVERY OF FUNCTION.
LET'S SEE.
>> YOU SHOULD HAVE CONTROL.
>> YES, AGAIN, NO DISCLOSURES.
AND SO, OVER 25 YEARS OF
NIH RO-1 SUPPORT IN PLASTICITY
AND RECOVERY FUNCTION AND I ALSO
HAVE A STRONG COMMITMENT TO
MENTORSHIP OF GRADUATE STUDENTS,
POST DOCTORAL FELLOWS ACCIDENT
JUNIOR FACULTY AND CLINICIAN
SCIENTISTS.
I WOULD LIKE TO DO IN OUR TIME
TOGETHER THIS AFTERNOON IS SHARE
SOME OF THE LESSONS LEARNED FROM
THE OUTSTANDING MENTORS THAT
HAVE GUIDED MY JOURNEY AND TO
SHARE SOME OF MY PHILOSOPHY ON
PRINCIPLES OF MENTORSHIP FOR
GROWING THE NEXT GENERATION OF
CLINICIAN SCIENTISTS.
SO A PRACTICED AS A CLINICAL
PHYSICAL THERAPISTS AND THEN
WENT INTO RESEARCH AND THE
RESEARCH IS FOCUSED ON
IDENTIFYING OBSTACLES TO REPAIR
AND RECOVERY.
IDENTIFYING WINDOWS OF
OPPORTUNITIES TO MODIFY THE
RESPONSE TO INJURY AND WILL ALSO
TOOK A LITTLE BIT ABOUT CURRENT
OUTLOOKS ON PLASTICITY.
SO I THINK IF YOU REFLECT BACK,
MENTORS HAVE MADE A CRITICAL --
PLAYED A CRITICAL ROLE IN MY
JOURNEY IN NEUROPLASTICKITY.
CHALLENGING THE WAY I THINK,
CREATING ENVIRONMENTS THAT
SUPPORT AN ACTIVE EXCHANGE OF
IDEAS, AND AS WE GET STARTED,
LIKE YOU TO JUST TAKE A MOMENT
AND THINK ABOUT SOME OF THE
INDIVIDUALS WHO HAVE SHAPED YOUR
JOURNEY PROFESSIONALLY.
I STARTED PRACTICE AS A CLINICAL
PHYSICAL THERAPISTS ALWAYS
INTERESTED IN
NEUROREHABILITATION, SPINAL CORD
INJURY, TRAUMATIC BRAIN INJURY,
STROKE, AND WAS ALSO VERY
INTERESTED INNYONATAL INJURIES.
AS I WAS FIRST PRACTICING, I
SHARED WITH LEADERS IN THE
PROGRAM AT GEORGE WASHINGTON
UNIVERSITY MY INTERESTS IN
NEUROAND IN EARLY LESIONS AND I
WAS PLACED IN A POSITION WHERE I
GOT ALL OF THENYONATAL REFERRALS
FOR THE NEONATAL INTENSIVE CARE
UNIT, DID A HUGE SPINAL CORD AND
TRAUMATIC BRAIN INJURY PRACTICE.
AND 1 OF THE THINGS THAT STARTED
MY YOWRNY ON MENTORSHIP WAS THE
REALIZATION THAT IT IS IMPORTANT
TO GIVE INDIVIDUALS AGENCY AND
ALLOW THEM TO DEVELOP IN THE
DIRECTIONS THAT THEY
INDIVIDUALLY WANT TO GROW AND I
CERTAINLY HAD THAT OPPORTUNITY.
AFTER I PRACTICED CLINICALLY FOR
A WHILE, I MOVED INTO A ROLE AS
AN EDUCATOR IN PHYSICAL THERAPY
AND I WAS 1 OF 3 INDIVIDUALS WHO
BUILT THE PHYSICAL THERAPY
PROGRAM AT HOWARD UNIVERSITY
ALONG WITH GENE MOORE, AND
GLORIA LAWSON.
IT WAS AN INCREDIBLE OPPORTUNITY
TO BUILD SOMETHING NEW FROM THE
GROUND UP AND AGAIN BUILDING
BUILDING AN
ENVIRONMENT THAT SUPPORTS THE
GROWTH AND DEVELOPMENT OF THE
INDIVIDUAL.
NOW THIS WAS A LONG TIME AGO AND
I AM ABSOLUTELY DELIGHTED TO BE
ABLE TO SAY THEY AM STILL IN
TOUCH WITH SOME OF THE STUDENTS
WHO I FIRST ENCOUNTERED AT
HOWARD.
I ALSO HAD THE OPPORTUNITY TO
ENCOUNTER GREAT LEADERSHIP AT
HOWARD AND THAT WAS WITH DEAN
HARLEY FLACK, SO IT WAS A NEW
PROGRAM, JEAN, GLORIA AND I WERE
NEW IN BUILDING THIS AND HARLEY
WAS NEW NONAPOPTOTIC HOWARD AND
HE DID AN ABSOLUTELY AMAZING JOB
IN FOSTERING THE DEVELOPMENT OF
THE PROGRAM.
AGAIN, ALLOWING ME TO FOCUS ON
MY INTEREST IN
NEUROREHABILITATION AND I ALSO
KNEW THAT EVENTUALLY I WAS GOING
TO MOVE INTO RESEARCH AND SO I
WAS TEACHING RESEARCH BASED
CLASSES IN NEURORECOVERY AND HAD
AN OPPORTUNITY FOCUSED ON GO TO
THE SOCIETY FOR NEUROSCIENCE AS
PART OF MY EDUCATIONAL
RESPONSIBILITIES AND THAT WAS
WHEN I FIRST MET MICHAEL
GOLDBERGER.
AND I WAS FOLLOWING HIS WORK, I
KNEW THEY WANTED TO GO INTO WORK
SIMILAR TO WHAT HE WAS DOING IN
PLASTICITY AND RECOVERY OF
FUNCTION.
AND THE OTHER THING THAT MADE
THAT POSSIBLE WAS HARLEY FLACK
SAID TO ME, BARBARA, YOU NEED TO
APPLY FOR THIS GRANT AND HE
SAYS, I DON'T KNOW.
HE ASKED ME, ADVISED THAT I
APPLY TO THE MARK FACULTY
PREDOCTORAL FELLOWSHIP AND I
SAID HARLEY, THEY DON'T NEED ME
BUT THEY DID.
THIS WAS MY FIRST GRANT AND IT
TRULY MADE AN INCREDIBLE
DIFFERENCE IN WHAT I'VE BEEN
ABLE TO DO THROUGHOUT MY CAREER.
MINORITY ACCESS TO RESEARCH
CAREERS PROVIDED TRAINING FOR
FACULTY AT -- FOR MINORITY
INSTITUTIONS TO PURSUE THEIR
RESEARCH AND THIS IS WHAT MADE
THE DIFFERENCE FOR ME MY HUSBAND
AND I LIVED IN ARLINGTON.
MICHAEL'S LAB WAS IN
PHILADELPHIA AT WHAT WAS THEN
THE MEDICAL COLLEGE OF
PENNSYLVANIA AND THIS GRANT MADE
IT POSSIBLE FOR ME TO ACTUALLY
DO MY GRADUATE WORK WHERE I
REALLY WANTED TO DO IT.
AND LOOKING BACK WITH 2020 HIND
SITE ON MY DECISION WHERE TO GO
FOR GRADUATE SCHOOL IT COULD NOT
HAVE BEEN BETTER WORKING WITH
MICHAEL AT MEDICAL COLLEGE
PENNSYLVANIA WAS A REALLY
UNUSUAL ENVIRONMENT AND THE
FURTHER AND FURTHER I GO ALONG,
THE MORE I VALUE IT.
SO MY INTEREST WAS ALWAYS IN
PLASTICITY AND RECOVERY OF
FUNCTION AFTER DAMAGE TO THE
DEVELOPING NERVOUS SYSTEM, WORK
IN MICHAEL'S LAB WAS SOLELY IN
THE ADULT NERVOUS SYSTEM.
IT DID NOT MATTER TO HIM.
HE REALLY WANTED INDIVIDUALS TO
DO THE WORK THAT THEY WANTED TO
DO AND CREATE AN ENVIRONMENT FOR
THAT TO BE POSSIBLE.
SO MY MENTORING PRINCIPLE THAT I
TAKE AWAY FROM THAT IS THE
INDEPENDENT OF TRAINEES TO WORK
ON SOMETHING RELATED TO THE
GOALS OF THE LAB, BUT ALSO
SOMETHING THAT THEY WILL TAKE
AWAY WITH THEM AND THAT'S
SOMETHING THAT HAS BEEN TRYING
DO WITH ALL THE FOLKS COMING
THROUGH MY LABORATORY.
AT THE TIME, PLASTICITY WAS
REALLY PUSHING THE SCIENTIFIC
BOUNDARIES BECAUSE PLASTICITY
THEA THE TIME WAS NOT WELL
ACCEPTED.
I MUST SAY THAT MICHAEL'S 1 OF
THE BRIGHTEST AND BEST CRITICAL
THINKERS I'VE EVER KNOWN.
ANOTHER LESSON FROM PIE TIME
THERE IS THAT IT REALLY WAS A
COMMUNITY OF LEARNING.
THERE WERE INDIVIDUALS WHO WERE
STUDYING PLASTICITY, SOME OF US
IN THE SPINAL CORD, SOME OF US
IN THE VISUAL SYSTEM, SOME IN
THE HIPPOCAMPUS, SOME IN THE
AUTONOMIC NERVOUS SYSTEM BUT THE
THEME WAS PLASTICITY AND IT WAS
REALLY A COMMUNITY OF LEARNING,
LESSONED LEARNED, XA EXCELLENCE
IS THE STANDARD, GOOD ENOUGH IS
NEVER GOOD ENOUGH.
LOOK FOR WHAT'S GOOD FIRST
RATHER THAN TRYING TO TEAR DOWN
SCIENTIFIC IDEAS.
LOOK FIRST WHAT'S GOOD AND THEN
BUILD FROM THERE.
AND I GUESS 1 OF THE OTHER
THINGS ABOUT THIS THAT WAS SO
TRANSFORMATIONAL WAS AT THE TIME
I WAS THERE, FIRST OF ALL FROM
THE TIME I TALKED IN THE DOOR, I
WAS NEVER SEEN AS ANYTHING LESS
THAN ANY INDIVIDUAL THAT WAS
THERE AROUND THE TABLE.
SO I NEVER SEEN AS A GRADUATE
STUDENT.
I WAS A PEER FROM DAY 1.
AND PART OF THAT
TRANSFORMATIONAL EXPERIENCE, THE
FACULTY WAS PUTTING TOGETHER A
PROGRAM PROJECT GRANT IN
NEUROPLASTICKITY AND I WAS 1 OF
THE INDIVIDUALS AT THE TABLE,
REVIEWING EVERY DRAFT, MAKING
COMMENTS, MY COMMENTS WERE
CONSIDERED OF EQUAL WEIGHT TO
ANYONE ELSE THERE AROUND THE
TABLE.
SO, PINS PEL -- PRINCIPLE OF
MENTORING IS TO MAKE SURE THAT
ERCH HAS THE MIND SET TO GET
INPUT AS PAPERS, AS GRANTS ARE
BEING DEVELOPED.
SO THE TO GET AN OUTSIDE SET OF
EYES ON WHAT YOU'RE DOING.
SO THE WORK ARE LOOKING AT
LESIONS IN DEVELOPMENT, TAKE
AWAY MESSAGES, AGE AT THE TIME
OF INJURY MATTERS.
THE RESPONSE IS EXCITATORY
INNED, THERE'S GREATER
PLASTICITY AROUND THE PATHWAYS
BOTH AROUND THE SITE LEADING TO
MEDIATING RECOVERY FUNCTION AND
THERE'S ALSO GREATER CELL DEATH
OF IMMATURE AXOTOMIZED NEURONS.
THIS IS 1 EXAMPLE LOOKING AT A
CORTICALE MEDIATED RESPONSE,
IT'S AUTOMATIC.
IT'S IN THE CONTROL ANIMALS.
IT DEVELOPS, WE WERE WORKING IN
NEONATAL KITTENS, IT'S ABSENT IN
NEW BORN KITTENS.
LESION MADE FIRST IN THE ANIMALS
THAT WERE LESIONED EARLY PLACING
EVENTUALLY DEVELOPS ABOUT 10-12
DAYS OF AGE AND IT'S ALWAYS
PERMANENT TACTILE PLACING IS
ALWAYS PERMANENTLY ABOLISHED
AFTER LESIONS IN THE ADULT.
LOOKING AT RETROGRADE TRACING,
WE FOUND THAT GIVING INJECTIONS
OF TRACER INTO THE SPINAL CORD
BELOW THE LEVEL OF THE INJURY
THAT AFTER NEONATAL LESIONS,
THERE IS NOT ONLY LABELING IN
THE INTACT CORTEX BUT ALSO IN
THE CORTEX THAT HAD THE PATHWAY
DAMAGED WHEREAS IN NEONATAL,
WHEREAS IN THE ADULT THERE'S NO
LONG-TERM GROWTH AROUND THE YOUR
SITE.
WE ALSO FOUND IF WE LOOK AT THE
RED NUCLEACE INSTEAD, THERE'S NO
PLASTICITY IN THE RED NUCLEACE,
AND INSTEAD THERE IS SIGNIFICANT
RETROGRADE CELL LOSS.
ANOTHER LESSON FROM THIS EARLY
TIME WAS THE IMPORTANCE OF
INTERINSTITUTIONAL INTERACTIONS
AT THE TIME I -- FROM MEDICAL
COLLEGE PENNSYLVANIA, WE HAD
ROUTINE MEETINGS WITH COLLEAGUES
AT PEN.
JOHN LU, BILL CHAMBERS, SOME OF
THE INDIVIDUALS WHO WERE
CRITICAL IN GUIDING OUR
UNDERSTANDING OF PLASTICITY AND
THAT IT WAS IN FACT OCCUR.
ANOTHER EXAMPLE OF THE
IMPORTANCE OF OUTSIDE INPUT TO
WHAT YOU'RE DOING, PAT GOLD MAN,
LATER PAT GOLD MAN RAKIC WAS THE
EXTERNAL MEMBER OF MY THESIS
COMMITTEE AND I SHARED THE WORK
WITH HER AND SHE SAID TO ME,
BARBARA, YOU NEED TO WRITE THIS
UP.
AND YES, I WAS WRITING UP THE
PAPERS AND SHE SAID, NO, YOU
NEED TO WRITE THIS UP AND SUBMIT
IT TO SCIENCE AND SO MY VERY
FIRST PROFESSIONAL PUBLICATION
BECAUSE OF PAT WAS IN SCIENCE,
MICHAEL NEVER WOULD HAVE THOUGHT
OF THIS, I CERTAINLY WOULD HAVE
NEVER THOUGHT OF THIS, BUT
AGAIN, IT'S BROADENING YOUR
ENVIRONMENT OF INDIVIDUALS WHO
ARE HELPING YOU TO GROW AND MOVE
FORWARD.
SOME OF THE LESSONS LEARNED FROM
MENTORS AND FRIENDS, QUESTION
AUTHORITY, BE BOLD, THINK BIG,
EXPECT THE UNEXPECTED, CREATE A
LEARNING AND GROWING ENVIRONMENT
DRIVEN BY EACH INDIVIDUAL, AND
THINK CRITICALLY.
WHAT IF?
NOT WE CAN'T BECAUSE ...
AND LOOK FOR WHAT'S POSITIVE IN
BUILDING GROWTH FROM THERE AND
THAT EVERY VOICE MATTERS.
WHEN I FINISHED MY GRADUATE WORK
WITH MICHAEL, I TOOK THE BRIDGE
TO POST DOCTORAL SUPPORT, POST
DOCTORAL STUDIES, AND WORKED
WITH PAUL RYER AT THE UNIVERSITY
OF MARYLAND AND AT THAT TIME HE
WAS ALSO LOOKING AT SPINAL CORD
INJURY IN ADULTS, IN RATS,
LOOKING AT NEURAL TISSUE
TRANSPLANTS WHICH WE NOW IN
RETROSPECT UNDERSTAND WERE STEM
CELLS LOOKING AT THEIR
CONTRIBUTION TO CNS REPAIR AND
PLASTICITY.
AND WE MADE SPINAL CORD OVER
HEAVY SECTION LESIONS AND
TRANSANGZS, PUT FEIGNAL PINEAL
CORD TISSUE INTO THE LESION AND
THE TRANSPLANT SURVIVED IN ALL
OF THEM AND WE FOUND THAT THE
TRANSPLANTS FOR THE STEM CELLS
RESCUED THE IMMATURE EGGS OUT OF
MICE NEURONS FROM CELL DEATH,
SUPPORTED THE REGENERATION OF
AXONS ACROSS THE LESION SITE AND
HELPED TO MEDIATE RECOVERY OF
FUNCTION.
SO IN TERMS OF THE RED NUCLEUS,
IN CONTROL ANIMALS, YOU CAN SEE
THE RED NUCLEUS, THE LOSS OF RED
NUCLEUS NEURONS AFTER NEONATAL
INJURY BUT THE TRANSPLANT
RESCUED THOSE NEURONS
SIGNIFICANTLY.
IN TERMS OF TRANSSECTION, HERE'S
AN EXAMPLE OF THE TRANSECTED
SPINAL CORD, TRANSECTED AT
BIRTH, ANIMAL WAS TRANSECTED AS
AN ADULT AND THE SPINAL CORD
TRANSPLANT IN THE LESION SITE
AND WE FOUND THAT THE
TRANSPLANTS SUPPORTED THE GROWTH
OF SUPER SPINAL AXONS ACROSS THE
LESION SITE AND BACK INTO THE
HOST SPINAL CORD KAWDAL TO THE
TRANSACTION AFTER THE NEONATAL
INJURY.
AND USING RETROGRADE DOUBLE
LABELING TECHNIQUES, WE WERE
ABLE TO SHOW THAT AFTER THE
EARLY LESIONS BOTH REGENERATING
AND LATE GROWING AXONS
CONTRIBUTED TO THE RECOVERY.
SO PLASTICITY OCCURS IN THE
NEONATAL AND THE ADULT NERVOUS
SYSTEM, THE EXTENT OF PLASTICITY
IS GREATER AFTER EARLY LESIONS
BUT IT CAN BE MODIFIED AND AFTER
A COUPLE OF YEARS AS A POST DOC,
I THINK A WAS A POST DOC FOR 2
YEARS WITH PAUL RYER, I DID
SOMETHING THAT I USUALLY ADVISE
MY POST DOCTORAL FELLOWS TO
AVOID.
I TOOK A FACULTY POSITION AT THE
UNIVERSITY OF MARYLAND AND
ESTABLISHED MY INDEPENDENT
LABORATORY AT THE INSTITUTION I
DID MY POST DOC.
AS IT TURNED OUT, IT WORKED OUT
WELL FOR ME, I GOT MY SECOND
MOST IMPORTANT GRANT, MY
INDIVIDUAL RO-1 SHORTLY AFTER I
BECAME A FACULTY MEMBER AND
COUPLE YEARS LATER, PAUL MOVED
FROM MARYLAND TO FLORIDA, SO I
DID NOT HAVE TO DEAL WITH THE
PERCEPTION OF INDIVIDUALS
OUTSIDE OF THE DEPARTMENT THAT I
WAS JUST A CLONE OF ANOTHER
FACULTY MEMBER.
AND IN THOSE SUBSEQUENT STUDIES,
COLLABORATIONS ACROSS
INSTITUTIONS AND STRUCTURES WORK
WITH FOLKS AT REGENERATED RON IN
THE PHARMACEUTICAL INDUSTRY TO
SHOW THAT BDNF, NT-3, AND NT-4,
NEUROTROAPIC FACTORS INCREASE
AFTER PLASTICITY AFTER INJURY IN
THE ADULT ACROSS THE BOARD
WORKING WITH MAURI, WE WERE ABLE
TO SHOW THAT TRANSPLANTS
INCREASED THE CELLULAR RESPONSE
TO RENAL CANCER GENERATION WHICH
IS NOT -- REGENERATION WHICH IS
NOT SEEN AFTER INJURY ALONE.
AND THEN, LOOKING AT THE
INCREASE OF GROWTH IN THE
NEOINATE AND THE ADULT WITH
TRANSPLANTS COMPARED TO INJURY
ALONE AND SO WHEN YOU THINK
ABOUT THE THINGS THAT PREVENT
REGENERATION, AND THE POTENTIAL
STRATEGIES FOR REPAIR, CERTAINLY
THE INTRINSIC NEURONAL FACTORS,
CELL DEATH, ATROPHY, LACK OF
UPREGULATION OF ASSOCIATE
REGENERATION ASSOCIATED GENES,
WITHIN THE EXTRINSIC
ENVIRONMENT, GLUE MARIOUSOSEIS,
THE INHIBITORY EXTRA CELLULARY
MATRIX AND WORKING WITH MARTIN
SCHWAB, AND LISA, WE WERE ABLE
TO SHOW THE GROWTH OF NEURONS
AFTER INJURY.
SO THERE ARE LOTS OF WINDOWS OF
OPPORTUNITY AFTER CNS INJURY TO
OFFER THE EXTERNAL ENVIRONMENT,
INTRINSIC CAPACITY FOR GROWTH,
THAT THESE LED TO RECOVERY OF
SKILLED AND PATTERN MOVEMENT AND
THE TEMPORAL WINDOWS EXTEND
BEYOND THE ACUTE INJURY PERIOD.
IT WAS ALSO EFFECTIVE AFTER
CHRONIC YOUR AND ACTIVITY,
REHABILITATION CAN MODIFY
PLASTICITY.
SO AGE MATTERS, TIME MATTERS,
SPECIFICITY OF THE ACTIVITY
MATTERS, NOT ALL PLASTICITY'S
BENEFICIAL, AND THE PLASTICITY
OCCURS AT MULTIPLE LEVELS OF THE
NERVOUS SYSTEM, THE LESSONS
QUESTIONED AUTHORITY, BE BOLD,
THINK BIG, EXPECT THE
UNEXPECTED.
AND THAT EVERYONE HAS A VOICE
AND A VOICE MATTERS.
AND THESE ARE THE COLLABORATIONS
I'VE HAD OVER TIME.
I'VE ALSO SPENT A LOT OF TIME
BEING -- HAVING THE ABILITY TO
TRAIN INDIVIDUALS.
I HAD AN T32 IN RECOVERY
FUNCTION AFTER CENTRAL NERVOUS
SYSTEM INJURY, THIS WAS THE
FIRST INSTITUTIONAL TRAINING
GRANT AT GEORGE TOWN AND IT
SUPPORTED 4 PREDOCTORAL AND 4
POSTDOCTORAL FELLOWS AND 2
SUMMER RESEARCH POSITIONS THE
NIDDRR, ADVANCED REHABILITATION
RESEARCH TRAINING AND THEN
NICHDR24 IN RECOVERY AFTER
INJURY.
IN EACH OF THE LATTER 2, IT WAS
A GROUP OF INDIVIDUALS BEYOND A
GIVEN INSTITUTION, SO THEY WERE
NOT JUST INDIVIDUALS AT GEORGE
TOWN.
WE ABOUT BUILT COMMUNITIES OF
SUPPORT ACROSS THE WASHINGTON
AREA AND FURTHER.
AND LOOKING AT THE OUTCOMES OF
THE R24, I KNOW SOME OF THIS IS
-- SOME OF THIS IS SMALL, BUT
INDIVIDUALS WHO WERE SUPPORTED
AS ASSISTANT PROFESSORS ARE NOW
PROFESSORS WITH NIH SUPPORT,
SOME OF THE NAMES WILL BE
FAMILIAR TO YOU.
MARK BOWDEN, DEBBACCAUS, GEORGE
WITTEN BURG.
MONICA PEREZ, ALL OF THESE
INDIVIDUALS ARE CONTINUING TO
PLAY LEADERSHIP ROLES IN THEIR
REHABILATION ACROSS THE COUNTRY.
SO THE FIRST IMPORTANT GRANT TO
ME WAS THE MARK FELLOWSHIP, THE
SECOND WAS MY INDIVIDUAL RO-1
AND SUBSEQUENT, THE 1 THING
TODAY THAT HAS BEEN THE MOST
IMPORTANT TO ME AS BEEN THE
INSTITUTIONAL K12 THAT WE JUST
FINISHED FROM THE NATIONAL
CENTER FOR MEDICAL
REHABILITATION RESEARCH.
HAD IS A GRANT THAT ALEX
DROMERICK AND I LAUNCHED AND
SHARED AS MPIs BEFORE HIS
DEATH.
EARLY CAREER DEVELOPMENT AND
MENTORING PROGRAM TARGETING
JUNIOR FACULTY, AND FOCUSED ON
PREPARING INDIVIDUALS FOR
RESEARCH CAREERS THAT LOOK AT
PLASTICITY AND RECOVERY FUNCTION
FOLLOWING CENTRAL NERVOUS SYSTEM
INJURY AND LOOKING AT A BROAD
NETWORK OF INDIVIDUALS.
NO PROFESSIONAL OR GEOGRAPHIC
BOUNDARIES.
WE RECRUITED SCHOLARS WITH ANY
ADVANCED NEUROREHABILITATION
RELATED DEGREES.
MDs, MD-Ph.D.s,
NEUROLOGIST, GERIATRICIANS,
PODIA TRYSTS, SPEECH LANGUAGE
PATHOLOGIST AND ALEX IN OUR
ORIGINAL CONCEPT THOUGHT OKAY,
WE WILL HAVE A BROAD NETWORK
THAT SORT OF GOES BETWEEN BOSTON
AND D. C. SORT OF AN AMTRAK
TRAIN HERE, AS IT TURNS OUT AS
WE PUT OUT THE CALL FOR
APPLICATIONS WE ACTUALLY HAD
SCHOLARS FROM ACROSS THE
COUNTRY.
THE GOALS WERE TO PROVIDE
OUTSTANDING RESEARCH TRAINING
AND MENTORSHIP, FOR CLINICAL
SCHOLARS AND THEIR
REHABILITATION, ANOTHER MAJOR
GOAL WAS TO CREATE A COMMUNITY
OF SCHOLARS AND TO PREPARE THESE
INDIVIDUALS FOR SUSTAINED AND
PRODUCTIVE CAREERS IN
NEUROREHABILITATION.
WE HAD AN INTERDISCIPLINARY,
INTERINSTITUTIONAL ADVISORY
BOARD COMPOSED OF MEMBERS FROM
SEVERAL CLINICAL DISCIPLINES,
ACCOMPLISHED VERY LONGS WHO KNEW
THE BARRIERS TO INTERDIN PLINARY
RESEARCH AND RESEARCH TRAINING.
AND REALLY HAD AN
INTERDISCIPLINARY WORLD VIEW.
ALEX AND SOME OF THE FOLKS AT
OUR ADVISORY BOARD, ALEX AND I
AND THEN SUSAN FROM NATIONAL
REHAB HOSPITAL, AMY FROM
HOPKINS, GEORGE WITTENBERG AT
THE UNIVERSITY OF MARYLAND, NOW
HE IS AT PITT.
RAJ RATTAN FROM CORNELL, LISA
CONNOR AT MASS GENERAL INSTITUTE
FOR HEALTH PROFESSIONALS, SHE'S
NOW AT WASH-U.
CATHY SCHLAUG FROM AT THAT TIME
HARVARD AND KREBS FROM THE
INSTITUTE OF TECHNOLOGY.
SCHOLARLY CHARACTERISTICS WE
LOOKED AT.
JUNIOR FACULTY, RECRUITED FROM
ALL RELEVANT DISCIPLINES,
RECRUITED NATIONALLY, USING OUR
BROADER LEADERSHIP TEAM THE
PROGRAM FOCUSED ON NERVOUS
SYSTEM, THE LEADERSHIP TEAM WAS
INTERDISCIPLINARY.
THE INTENT WAS TO FUND
INDIVIDUALS FOR 2 OR 3 YEARS AND
WE ASKED A COMMITMENT FROM THEIR
HOME INSTITUTION THAT THE HOME
INSTITUTION COMMIT AT LEAST 50%
OF THEIR EFFORT FOR THE NEXT 3
YEARS.
WE LOOKED AT TRAINING, BOTH AT
UNIVERSITIES, PLUS NONPROFIT
ACADEMIC AND REHAB SETTINGS, THE
MENTORING, COULD OCCUR ANYWHERE,
INCLUDES BOTH BASIC AND CLINICAL
SCIENTISTS ON EACH INDIVIDUALS
MENTORSHIP TEAM, THE LOCAL
MENTORS WERE SUPPLEMENTED BY THE
NATIONAL MENTORS IDENTIFIED BY
THE EXECUTIVE COMMITTEE AND WE
ALSO INCLUDED AN EXECUTIVE COACH
AS A MENTOR.
SO WHAT THE PROCESS LOOKED LIKE
WE HAD WE HAD AS THE SCHOLARS
APPLIED WE HAD A MENTORSHIP TEAM
OF THE PROGRAM DIRECTORS AND
EACH MENTORSHIP TEAM INCLUDED
BOTH BASIC SCIENCE AND CLINICAL
SCIENCE AS THE SCHOLARS ENTERED
THE PROGRAM, THEY DEVELOPED BOTH
THEIR RESEARCH PLAN AND AN
INDIVIDUAL CAREER DEVELOPMENT
PLAN.
WE HAD ONGOING ACTIVITIES,
MONTHLY SEMINARS ROUTINE
MEETINGS WITH THE MENTORS AND
THE MENTORSHIP COMMITTEE, WE HAD
TWICE YEARLY WE HAD TWICE YEARLY
IN-PERSON MEETINGS, 1 WITH THE
AMERICAN ASSOCIATE FOR REHAD
BEEN ILLEGALSITATION, WE WOULD
RUN A WORKSHOP FOR 2 DAYS AHEAD
A DAY AND A HALF OF THAT WAS
COMMITTED TO OUR SCHOLARS ALONE,
THE SECOND HALF A DAY WAS A
WORKSHOP THAT WAS OPEN TO THE
BROADER COMMUNITY OF ASMR
PARTICIPANTS WHO WERE GETTING
THERE EARLY.
AND 1 OF THE THINGS THAT I AM SO
PROUD TO SAY IS THAT OF ALL OF
THE SCHOLARS THAT WE TRAINED,
ALL OF THEM ARE STILL ACTIVELY
ENGAGED.
SO WE HAVE PLASTICITY CENTERED
MEETINGS THIS THEY COME TO NOW
THANKS TO COVID, WE'RE ABLE TO
DO THESE REMOTELY.
WE ARE DOING THEM HYBRID NOW.
A JOURNAL CLUB SERIES AND LET'S
SEE -- I'VE LOST CONTROL AGAIN.
>> BARBARA IF YOU JUST CLICK ON
THE PRESENTATION SHOULD YOU BE
GOOD.
THERE YOU GO.
>> THANK YOU.
THANK YOU.
WANDERING, WANDERING TOO MUCH.
SO YES, THE SCHOLAR TIMELINES
AND MILESTONES, THE INDIVIDUAL
AND CAREER DEVELOPMENT AND
RESEARCH PLANS GETTING THEIR
INTERDISCIPLINARY MENTORSHIP
TEAM TOGETHER, EXPECTING THEM TO
WRITE AN INDEPENDENT GRANT EARLY
ON DOING GRANTS -- GRANTS ISSUES
WRITING TRAINING BOTH LOCALLY
AND THEN IN THE SECOND YEAR
WE'VE ASKED THEM TO APPLY TO THE
TIGER, AND MANY OF THOSE
PARTICIPATED IN THAT AS WELL.
THE SPRING MEETING ASSOCIATED
WITH THE AMERICAN SOCIETY FOR
NEUROREHABILITATION.
THE FALL MEETING WE HAVE LOCALLY
AT GEORGE TOWN AND IT HAS --
CLICK ON THIS AGAIN.
AND THE SORTS OF THINGS THAT WE
HAVE INCORPORATED IN THE SCHOLAR
TRAINING, GRANT AND BUDGET
MANAGEMENT, SKILLS AND, THE
DEVELOPMENT OF LEADERSHIP
SKILLS, SCIENTIFIC WRITING,
GRANT WRITING, PEER, NEAR PEER,
MENTOR SUPPORT.
AS Is ALL OF OUR EARLY
SCHOLARS CONTINUE TO BE ENGAGED
AND THEY ARE REALLY AN
INCREDIBLE COMMUNITY OF
SCHOLARS.
ONE OF THE FELLOWS WAS STARTING
TMS IN HER LABORATORY IN ROUGH
ATOM CHESTER SCHOLAR AT CASE
WESTERN HAD IT UP AND RUNNING,
HE BROUGHT HIS LAB UP TO ROUGH
ATOM CHEST -- ROCHESTER AND
HELPERRED HER GET HER DMS
RESEARCH UP AND GOING.
WE'RE CONCENTRATING ON
RECRUITMENT, SCIENCE,
DISSEMINATION AND
IMPLEMENTATION.
AND RESEARCH METHODS AND HEALTH
OUTCOMES AND DISABILITY STUDIES.
AND THIS JUST SHOWS THE
MULTIDISCIPLINARY TRAINING, THE
COMMUNITY ENGAGEMENT AND THE K12
SCHOLAR OUTCOMES.
I MENTIONED WE HAVE A
PROFESSIONAL COACH BECAUSE A LOT
OF TIMES AS SCHOLARS ARE
TRANSITIONING TO AN INDEPENDENT
CAREER, THERE ARE A LOT OF
THINGS THAT ARE NOT SCIENCE
RELATED THAT CAN LIMIT THEIR
PRODUCTIVITY AND ADVANCEMENT.
SO, YOU KNOW, GETTING THEM TO
HAVE A SAFE SPACE THAT THEY CAN
WORK WITH THE COACH AND SO THE
COACH WAS A CERTIFIED COACH,
LORI OFFERING OUTSIDE
PERSPECTIVE WHILE THE SCHOLARS
WERE SUPPORTED BY THE K12, SHE
MET WITH THEM MONTHLY AND THEN
HAD THE OVERALL GROUP SESSIONS
IN THE FALL AND THE SPRING AS
PART OF OUR -- AS PART OF OUR
WORKSHOPS.
>> BARB, YOU HAVE JUST UNDER 10
MINUTES LEFT, JUST SO YOU KNOW.
>> I AM ABSOLUTELY THERE, THANK
YOU FOR THE HEADS UP ON THAT
RALPH.
SO, LOOKING AT THEIR VISION AND
GOALS, ARTICULATING WHERE
THEY'RE GOING AND THERE'S OFTEN
DYNAMIC WITH A NEW FAC
ULTIMATELYY MEMBER BEING
UNCERTAIN OF THEIR ABILITY TO
HAVE A VOICE IN A DEPARTMENT.
SO GIVING THEM THE SKILLS TO BE
ABLE TO DO THAT, SO THAT CAN
CONTINUE TO DRIVE THEIR RESEARCH
AND THEIR LAB DEVELOPMENT.
THE K12 SCHOLARS THAT WE
SUPPORTED WERE BERK REHAB,
CORNELL, UNIVERSITY OF MARYLAND
AT BALTIMORE, ROCHESTER,
RUTGERS, MATT Mc LAUGHIN AT
UNIVERSITY OF KANSAS CITY,
SHASHWATI GE, D AT UTEP.
UNIVERSITY OF TEXAS AT EL PASO,
ANDREW DEMARC O, AT NRH, AND
DAVID CUNNINGHAM FROM CASE
WESTERN, SELES GADSON, SHE WAS
AT GEORGE TOWN, SHE PASSED AWAY
EARLIER THIS YEAR.
ABHISHEK JAYWANT AT CORNELL,
SARRA PILLAY, AT COLLEGE OF
WISCONSIN, SARAH HUSSAIN, AT
UNIVERSITY OF TEXAS AT AUSTIN,
MACKENZY FAMA AT GEORGE
WASHINGTON UNIVERSITY AND THEN
WE HAD 2 FULL PARTICIPANTS WHO
WERE SUPPORTED BY INDEPENDENT
K-AWARDS.
SO IT WAS OLUWOLE AWOSIKA AT
UNIVERSITY OF SIN SUDDEN ATY WAS
SPRPTED BY THE DEVELOPMENT OF
NEUROLOGY AWARD AND EMILY
GRATTAN, FIRST AT UNIVERSITY OF
SOUTH CAROLINA AND NOW AT PITT,
BY A VA INDEPENDENT FELLOWSHIP.
AND THESE ARE THEIR FACES.
ANIA, ROBIN, KONSTANTINOS, MATT,
SELES, DAVID, ANDREW, ABISHEN,
AND SARAH, AND THEN EMILY,
OLEWI.
EACH OF THEM DEVELOPED A STRONG
INDEPENDENT LAB, HAS STRONG
PUBLICATION RECORD INCLAUDING
PAPERS IN PNS JOURNAL OF
NEUROSCIENCE, THEY ARE NOW
INVOLVED IN THEIR OWN TRAINING
OF GRADUATE STUDENTS, POST DOCS
AND MEDICAL STUDENTS.
SOME OF THEM PLAY LEADERSHIP
ROLES IN CLINICAL TRIALS, SUCH
AS SITE PIs FOR STROKE NET AND
THEY ARE TRULY A COMMUNITY AND
THAT IS THE BIGGEST GIFT THAT I
CAN IMAGINE.
I DO BELIEVE THAT THEY WILL BE
THE NEXT GENERATION OF SCHOLARS
IN NEUROREHABILITATION
NATIONALLY.
AND ALMOST ALL OF THE SCHOLARS
HAVE ATTAINED INDEPENDENT
EXTRAMURAL FUNDING.
K99, RO-1s, K23S, RO3S, AND
OTHERS WITH FOUNDATION GRANTS.
SO FOR EXAMPLE, ROBIN BRAN, WITH
AN RO3, ANIA WITH AN RO3, DAVID
CUNNINGHAM WITH AN RO-1 AND IT
JUST SHOW HAPPENED YOU KNOW
SOMETIMES THERE ARE GIFTS IN
LIFE, WE WERE AT AN OCTOBER
WORKSHOP FOR THE K12 WHEN HE GOT
THE NOTIFICATION FROM NIH THAT
HE GOT HIS AWARD.
YOU CAN IMAGINE THE CELEBRATION
AT THAT TIME.
ANDREW DEMARC O WITH K99 ROO.
MCKENZIE WITH FOUNDATION
SUPPORT, BEFORE SHE DIED SELES
HAD A AAAS FELLOWSHIP AND SHE
WAS NAMED AT AMERICAN SOCIETY
FOR NEUROREHAPPEN
ILLEGALSITATION DIVERSITY
FELLOW, R21, K23S AND IN FACT,
VIV HUSSAINE HAS MULTIPLE RO-1S
IN ADDITION TO SUPPORT, THEY
CONTINUE AS A COMMUNITY.
THE SCHOLARS COLLABORATE WITH
EACH OTHER AND THEY ARE PART OF
THE FUTURE OF NEUROREHAB.
THE LESSONED LEARNED AS I SAID
BEFORE, QUESTION AUTHORITY,
THINK BOLD, CREATE A LEARNING
DEVELOPMENT, LOOK FOR WHAT'S
POSITIVE AND BUILD FROM THERE
AND THAT EVERYONE HAS A VOICE
AND EVERY VOICE MATTERS.
IN TERMS OF MENTORSHIP, IT'S
ESSENTIAL TO HAVE A COMMUNITY OF
SCHOLARS, INTERDISCIPLINARY,
INTERPROFESSIONAL,
INTERINSTITUTIONAL.
I BELIEVE STRONGLY THAT ANY
MENTORSHIP TEAM NEEDS TO BE
MULTILINGUAL IN CELLULAR AND
MOLECULAR SYSTEMS AND CLINICAL
AREAS.
EVERYONE HAS A VOICE AND NEED TO
CREATE A SAFE SPACE.
SO THANK YOU.
>> WELL, WOW, VERY MUCH
APPRECIATE THE TALK.
AS A PROGRAM OFFICIAL, I'VE BEEN
ABLE TO LOOK OVER YOUR SHOULDER
A LITTLE BIT AND I APPRECIATE
HOW YOU BROUGHT THESE PEOPLE
TOGETHER AND DO TO CREATE A
COMMUNITY AND DO IT ACROSS
MULTIPLE CLINICAL DISCIPLINE
ANDS QUITE A TRICK SO WE
APPRECIATE NOT ONLY YOUR OWN
RESEARCH BUT YOU'VE GIVEN SO
MUCH BACK TO THE COMMUNITY.
SO LET'S TAKE QUESTIONS.
I THINK I SAW MICHELLE, DO YOU
HAVE A QUESTION THERE?
>> I WAS ACTUALLY REACTING AND
JUST SAYING BARB THAT WAS A
REALLY GREAT AND INSPIRATIONAL
TALKMENT I REALLY ENJOYED JUST
SEEING HOW YOUR CAREER KIND OF
UPLIFTED SO MANY DIFFERENT
PEOPLE XI RESONATE WITH THE IDEA
THAT YOU SAID IT TAKES A
COMMUNITY AND THAT YOU KNOW TO
SUCCEED AS A SCIENTIST, YOU
REALLY NEED TO BE BUILDING ON
THE BACKS OF OTHER PEOPLE AND
BRINGING OTHER PEOPLE ALONG WITH
YOU IN ORDER TO KIND OF BE
EXCELLENT AND YOU KNOW THANK YOU
FOR THE WORK THAT YOU'VE DONE IN
THIS FIELD.
IT'S JUST PHENOMENAL AND JUST
EXCITING TO SEE JUST HOW MUCH
YOU'VE AFFECTED SO MANY PEOPLE.
>> THANK YOU.
>> LUIS, I SEE YOU'RE HAND UP
NYEAH, THANK YOU BARBARA, I WANT
TO TAKE A MOMENT JUST TO SAY
THANKS
THANKS FOR YOUR YEARS AND YOUR
AWESOME EXAMPLE YOU SERVE TO SO
MANY PEOPLE AND SPEAKING ON
BEHALF OF ASMR, YOU KNOW NOW
TAKEN--THEY I'M PRESIDENT OF
THEIR SOCIETY IT'S BEEN AWESOME
TO ENGAGE WITH THE K12 OVER THE
YEARS AND SEE THE NUMBER OF
PEOPLE THAT HAVE COME TO OUR
MEETING AND OUR SOCIETY THAT
EXEMPLIFY EXACTLY THE GOALS OF
WHAT YOU TRY DO AND ALSO JUST BY
MENTION, DR. GADSON, WE HAD A
MEMORIAL FOR HER, AND IT WAS
WONDERFUL TO KNOW OF HER AND
INFLUENCE IN THE SOCIETY BUT
ALSO THE RIPPLES TO GO BACK TO
THE METAPHOR YOU USE THERE, THE
RIPPLES SHE WAS MAKING AND THAT
SHE CERTAINLY MADE IN THE LIVES
OF MANY PEOPLE.
SO THANK YOU SO MUCH FOR ALL THE
WORK YOU'RE DOING AND CONTINUE
TO DO, HAVE DONE, WE CERTAINLY
APPRECIATE YOU AT ASNR.
NTHANK YOU LOUIS AND I THINK THE
ABILITY OF ASNR, TO ADDRESS
ACROSS THE SUBCOMECIALTS IT IS
OF SUCH VALUE AND SO IT WAS AT
THE ASNR MEETING WE HAD ALL OF
OUR SCHOLARS, ALL OF OUR
EXTERNAL ADVISORS BEING PART OF
THE MEETING BECAUSE IT IS SUCH A
STRONG MEETING AND MEETS THE
NEEDS OF SO MANY PEOPLE SO THANK
YOU.
>> AND I SEE CHRIS AND THEN
CATHY AND I THINK WE WILL HAVE
TO GET ON TO THE NEXT TALK AFTER
THAT.
SO LET'S HAVE THOSE 2 COMMENTS.
CHRIS?
>> THANKS RALPH, AND BARBARA
THAWNK YOU SO MUCH FOR SUCH AN
INTERESTING AND INSPIRING TALK.
IT JUST MAKES US REALIZE HOW
IMPORTANT THE MENTORSHIP
ACTIVITIES WE'RE DOING, HOW MUCH
THOSE MATTER.
I'M WONDER IF YOU COULD TALK FOR
JUST A LITTLE BIT ABOUT THE
DECISION TO INCLUDE PROFESSIONAL
COACHING IN THE MENTORSHIP
PROGRAM.
THAT'S A BIT UNUSUAL AND A
REALLY EXSEATING SEATING ADDITII
WOULD LIKE TO HEAR MORE ABOUT
THE PROCESS AND HOW IT CAME
ABOUT.
>> WELL, IT CAME ABOUT BECAUSE
LAURIE WAS DOING COACHING WITH
OUR MEDICAL STUDENTS AT THE
TIME, HAD AN INTERNAL GRANT, AS
PART OF THAT AND IT REALLY
CREATES A SAFE SPACE FOR THE
SCHOLARS TO BRING UP QUESTIONS
THAT THEY WOULD NOT WANT TO
BRING UP WITH THEIR MENTORS.
SO WE ARE IN THE PROCESS OF
GATHERING THE DATA AND THE
FEEDBACK TO GET THE IMPACT ON
THE SCHOLARS THEMSELVES WE SEE
IT FROM OUR SAID AND HOW IT'S
MADE SUCH A DIFFERENCE AND WE
LOOKING TO GET THAT BUT
ANECDOTALLY THEY FIND IT TO BE
ABSOLUTELY ESSENTIAL TO THEIR
GROWTH AND THRIVING.
AND KATHLEEN, WHAT DO YOU HAVE
TO SAY?
>> HI, BARB, THANK YOU.
IT WAS REALLY, GREAT TO HEAR
THIS PERSPECTIVE.
I APPRECIATED MANY THINGS IN
THIS BUT I WANTED TO ASK YOU A
LITTLE BIT ABOUT INCORPORATING
IMPLEMENTATION AND DISSEMINATION
BECAUSE I THINK THIS IS SUCH AN
IMPORTANT PEEZ OF THIS THAT IS
GROWING NOW AND I'M CURIOUS HOW
YOU FOUND PEOPLE TO INCORPORATE
IN THIS AREA.
>> WELL, YOU MAY REMEMBER, FROM
DECEMBER, DOROOGHTY EDWARDS WAS
PART OF MEETING, AND SO I WORKED
WITH DOROTHY A NUMBER OF YEARS
AND SHE HAS BEEN HELPING GUIDE
US THERE AND ALSO BRINGING IN
COLLEAGUES FROM STROKE NET AND
I'M ALSO ON A P50 GRANT FOR
YOUNG INVESTIGATORS FOCUSING ON
STROKE, CANCER AND MATERNAL
HEALTH AND WE'RE FOCUSING ON
COMMUNITY ENGAGE WANT AS PART OF
THAT.
I DON'T KNOW WHERE THAT IS AT
THE MOMENT.
>> THANK YOU.
>> ALL RIGHT, SO THANK YOU VERY
MUCH.
THERE'S OTHER COMMENTS AND WE
HAVE TO GET ON, BUT IT WAS NICE
TO HEAR ABOUT YOUR EFFORTS.
YOU'RE A GREAT ROLL MODEL FROM
THE FIELD.
SO WE WILL SHIFT GEARS A LITTLE
BIT AND WE WILL GO TO DAWN EHDE,
WHO WILL TALK ABOUT SOME OF HER
OWN INTEREST AS A RETIRING BOARD
MEMBER AND DAWN IS SOMEBODY THAT
DOES A LOT OF RESEARCH ON
MULTIPLE SCLEROSIS AND CHRONIC
PAIN AND FATIGUE STUDIES.
SHE'S A NEUREE PSYCHOLOGIST AT
THE WASHINGTON DEPARTMENT OF THE
MEDICINE.
SHE HOLDS THE UW NANOG NANCY AND
BUSTER ENDOWED RESEARCH IN
MULTIPLE SCLEROSIS CHAIR AND SHE
CONDUCTS RANDOMIZED CLINICAL
CONTROL TRIALS FOR THE BENEFITS
OF BEHAVIORIAL AND MINDFULNESS
BASED INTERVENTIONS FOR CHRONIC
PAIN, FATIGUE, AND/OR MOOD
MANAGEMENT IN ADULTS WITH
ACQUIRED NEUROLOGICAL CONDITIONS
OR PRIMARY FOCUS BEING IN
MULTIPLE SCLEROSIS, AND DAWN,
WHY DON'T YOU GO AHEAD AND
EDUCATE US.
>> GREAT.
THANK YOU EVERYBODY.
WOW, THATIA A TOUGH ACT TO
FOLLOW BUT I DO MY BEST.
AS RALPH SAID I'M A PSYCHOLOGIST
AT THE UNIVERSITY OF WASHINGTON
AND I WILL POINT OUT I'M ALSO
MANY YEARS AGO WAS A T32 FUND BY
NCRR FELLOW SO I THINK FOR MANY
REASONS I OWE A LOT OF MY
RESEARCH CAREER TRAJECTORY TO
THE FACT I GOT A VERY STRONG
GROUNDING IN PAIN RESEARCH
THROUGH MARK JENSEN WHO MANY OF
YOU MAY KNOW.
TODAY I WILL TALK ABOUT
BEHAVIORIAL INTERVENTIONS FOR
CHRONIC PAIN AND FATIGUE IN MS.
FOR THOSE WHO DON'T KNOW MUCH
ABOUT MS, I WILL BRIEFLY MENTION
IT'S REALLY A CHRONIC
NEUROINFLAMMATORY AUTOIMMUNE
DISEASE AFFECTING THE CENTRAL
NERVOUS SYSTEM.
AND REALLY RESULTS IN
DEMILEINATION RESULTING IN A
VARIETY OF SYMPTOMS, MANY OF
THEM UNPREDICTABLE BUT REALLY
INCLUDES A LOT OFICISM TOPS I
WILL DESCRIBE TODAY.
TYPICALLY BEGINS IN YOUNG TO
MITTED ADULTHOOD, MANY PEOPLE
LIVE WITH IT DURING THE PRIME OF
THEIR LIVES AND IT'S MORE COMMON
IN WOMEN.
AND EVEN OVER THE LAST 20 YEARS
WE HAD THE ADVENT OF DISEASE
MODIFYING THERAPIES.
IT UNFORTUNATELY, PEOPLE EVEN
THOUGH THEY CAN DO VERY WELL, IN
TERMS OF THE SLOWING OR STOPPING
PROGRESSION, IN MANY CASES,
PEOPLE STILL HAVE A LOT OF
SYMPTOMS.
AND SO THAT'S KIND OF BEEN THE
FOCUS OF OUR WORK.
LET'S SEE.
AND AS RALPH SAID EARLIER THIS
MORNING ISSUES EVEN THOUGH I'M
FOCUSING ON MS, THERE'S REALLY
MORE COMMONALITIES AMONGST THE
REHAB POPULATION, SPECIALLY THE
NEURO-POPULATION SO MUCH WHAT
HAVE I CAN SAY CAN ALSO APPLY TO
TRAUMATIC BRAIN INJURY, SPINAL
CORD INJURY WHICH ALSO HAVE
CHRONIC PAIN AS VERY COMMON SO
TODAY I WILL FIRST -- LET'S SEE.
OKAY, THERE WE GO.
IESM GOING TO FIRST TALK ABOUT
WHY PAIN AND FATIGUE, WHY THAT'S
A CONCERN AND THEN I WILL TALK
ABOUT KIND OF WHAT IS THE
EVIDENCE FOR BEHAVIORIAL
INTERVENTIONS.
AND THEN FINALLY WHERE DO WE GO
FROM HERE?
TO DO THEY WANT TO GIVE A LITTLE
CONTEXT, FIRST, HOWEVER, BECAUSE
I THINK THAT OUR RESEARCH GROUP
AT THE UNIVERSITY OF WASHINGTON
IS KIND OF UNIQUELY SITUATED.
WE GO BACK ALL THE WAY TO THE
1980S, BEFORE I THINK MOST OF US
WERE EVEN WORKING THERE, AND
SOME OF MY STAFF WEREN'T EVEN
BORN YET.
WHEN DR. GEORGE CRAFT, A
PSYCHIATRIST AND I BELIEVE HE
WAS A MEMBER OF THIS BOARD
PUBLISHED AN ARTICLEOT
PREVALENCE AND IMPACT OF FATIGUE
IN PEOPLE LIVING WITH MS.
AND THIS WAS 1 OF THE VERY FIRST
AND THAT REALLY LAUNCHED A
VARIETY OF RESEARCH STUDIES IN
THE FIELD AS WELL AS THE
UNIVERSITY OF WASHINGTON.
1998 HE WAS AWARDED AN MSRTC
FROM NIDILRR, WE HAD THAT FOR 15
YEARS AND I STILL REMEMBER WHEN
EARLY I THINK IT WAS EARLY IN
THAT GRANT HE ASKED ME, I WAS A
PAIN RESEARCHER BUT HE ASKED ME
TO JOIN THEM AND BRING MY PAIN
EXPERTISE TO EVENTS AND SO WE
STARTED PUBLISHING PAPERS ON MS
AND PAIN AND DEPRESSION AND IT
WAS AN IMPORTANT MENTOR FOR KIND
OF LAUNCHING MY CAREER, THEN IN
2012, WE OUR CLINIC REALLY
MERGED WITH OUR RESEARCH AND
TRAIN NOTHING A NEW SPACE IN 1
MULTIDISCIPLINARY CENTER AND
WHAT'S UNIQUE ABOUT THIS IS THAT
IT'S REHAB MEDICINE, IT'S OTPT
SPEECH, SOCIAL, VOCATION, AND
OCCUPATION, AND NEUROLOGY SUITE
ALL IN 1 BUILDING AND
OPHTHALMOLOGY AND WE REALLY HAVE
OUR RESEARCH INTERNATIONAL
-- INTEGRATED INTO
THE CLINIC SUCH THAT EACH
PATIENT IS OFFERED THE
OPPORTUNITY TO JOIN OUR REGISTRY
AND SIGN UP FOR RESEARCH.
IN 2018, DR. KEVIN AND I STARTED
THE UW RESEARCH AND WELLNESS
CENTER.
SO MUCH OF THE RESEARCH THAT
COMES OUT OF OUR CENTER IS IN
THE AREA OF REHABILITATION.
OOPS, I WANT TO GO BACK FOR A
MINUTE.
THERE WE GO.
JUST ON THIS SIDE YOU SEE OUR
CURRENT STAFF, WE ALSO PARTNER
WITH FACULTY OUTSIDE THE
UNIVERSITY, I WANT TO SHOUT OUT
DR. ANNA WUNDES, AND SHE WENT ON
TO START HER LAB AT THE
UNIVERSITY OF MISH PISH AND IS A
FREE RADICALS QUEBT COLLAB
RETIREDDOR WITH MYSELF AND SHE
HAS A K24 AWARD SO SHE IS
TRAINING THE NEXT GENERATION TO
CONTINUE WITH THAT THEME.
ALSO DR. NORA FRITS AT WAYNE
STATE UNIVERSITY, MANY UW
FACULTY INCLUDING NEUROLOGISTS
AND OUR FUNDING AND MUCH OF WHAT
I'M TALKING WITH YOU TODAY IS
REALLY IS BASED ON A DIVERSE
FUNDING PORTFOLIO AS CAN YOU SEE
THE VARIOUS IMAGES REPRESENTING
THAT.
I WOULD BE REMISS IF I DIDN'T
MENTION REALLY OUR WORK AND THE
WORK I'LL BE DESCRIBING TO YOU
IS BASED ON A 15 YEAR PLUS
HISTORY OF ENGAGING WITH THE MS
COMMUNITY.
WE HAVE HAD A VARIETY OF PEOPLE
THAT WE HAVE ENGAGED THROUGH
BOTH A NETWORK AS WELL AS A
COMMUNITY ADVISORY BOARD WHERE
WE CURRENTLY HAVE 10-12 PEOPLE
WITH MS WITH LIVED EXPERIENCE OR
AFFECTED BY MS, AND THEY ARE
PAID ACTIVE RESEARCH PARTNERS
WHO INSURE OUR WORK REFLECTS THE
EXPERIENCES AND PERSPECTIVES OF
THOSE AFFECTED BY MS, AND SO,
UNFORTUNATELY BECAUSE OF MY
ALBERT ENDOWMENT, I'M ABLE TO
PAY THEM FOR THEIR TIME AND
EXPERTISE AND REALLY IN THE LAST
15 YEARS WE HAVE DRAWN ON THEIR
EXPERTISE FOR PRIORITIES, STUDY
DESIGN, STUDY MATERIALS AND
PROCEDURES, STUDY RESULTS AND
HELP US DISSEMINATE FINDINGS.
SO WHY PAIN AND FATIGUE?
WELL THIS IS SOMETHING I
COMMONLY HEAR WHEN I TALK TO
GROUPS OF PEOPLE WITH MS.
I HEAR THIS A LOT, THIS WAS FROM
A WEBINAR LAST FALL.
PAIN IS MY BIGGEST PROBLEM AND
THE MOST OVERLOOKED BY MY
PROVIDERS.
SO MS AFFECTS OVER 1 MILLION
AMERICANS AND AS YOU SEE HERE,
THE STATISTICS, BUT THE POINT
REALLY BEING THAT YOU KNOW MANY
SYMPTOMS, NOT JUST PAIN AND
FATIGUE ARE VERY, VERY COMMON
THIS PEOPLE WITH MULTIPLE
SCLEROSIS, EVEN WITH THE DMTs
WHICH AS I MENTIONED HAVE REALLY
CHANGED, MS CARE FOR THE GOOD,
WE STILL FIND THAT 90% OF THE
PEOPLE WITH MS EXPERIENCE
FATIGUE, 50-80% CHRONIC PAIN,
SLEEP, COGNITIVE DYSFUNCTION AND
PSYCHOLOGICAL DISORDERS ARE
VERY, VERY COMMON AND MUCH MORE
COMMON THAN IN MANY OTHER
CHRONIC CONDITIONS IN THE
GENERAL POPULATION.
AND OF COURSE WITH THESICISM
TOPS THEY OFTEN AFFECT DAILY
ACTIVITIES, THEY INTERACT WITH 1
ANOTHER, AND AFFECT
PARTICIPATION AND QUALITY OF
LIFE.
SO WAY WANT TO DO NOW IS JUST SO
YOU A FEW SLIDES FROM 1 OF OUR
STUDY SAYS, THIS IS WHAT WE
CALLED OUR LAND OR LIFE AFTER
NEW DIAGNOSIS STUDY, IT WAS
FUNDED BY THE NATIONAL MS
SOCIETY AND IT WAS AWARDED TO
DR. KEVIN 1 OF MY COLLEAGUES BUT
FROM 2014 TO 2018, WE APPROACHED
ALL NEWLY DIAGNOSED PATIENTS AT
2 MS CENTERS IN SEATTLE.
AND INVITED THEM TO BE PART OF A
STUDY WHERE WE COLLECTED
OUTCOMES MONTHLY OR AT MONTHS 1,
2, 3, 6, 9 AND 12, SO WE REALLY
FOLLOWED THEM FOR THE FIRST YEAR
AFTER DIAGNOSIS.
AND WE FOUND AND LOOKED AT A LOT
OF SYMPTOMS AND FUNCTIONAL
MEASURES AND WE FOUND THAT THE
MOST COMMON SYMPTOM NOT
SURPRISINGLY WAS FATIGUE WITH
63% ENDORSING FATIGUE AT ANY
TIME POINT IN THIS FIRST YEAR.
INTERESTINGLY ONLY 3% HAD
PROGRESSIVE MS AND DISABILITY
AND REALLY, AND DISABILITY WAS
MILD FOR THE MAIORITY OF THE
SAMPLE AND YET FATIGUE WAS QUITE
COMMON, AND WHAT YOU SEE AND
HEAR I SHOULD DESCRIBE THIS.
THIS IS THE DISINKI DIAGRAM, SO
THIS IS THE VARIOUS CATEGORY
DISTRIBUTIONS AT EACH TIME
POINT.
SO AT THE BOTTOM YOU HAVE MEANS
AND STANDARD DEVIATIONS AND THEN
YOU SEE HERE THE PROPORTION WITH
THE GREEN BEING THOSE WHO HAD
SIGNIFICANT FATIGUE AND THE
YELLOW BEING THOSE -- SORRY THE
YELLOW WITH SIGNIFICANT AND THE
GREEN WAS NOT SIGNIFICANT
FATIGUE, SO YOU CAN SEE AFTER
THIS FIRST YEAR OF DIAGNOSIS,
YOU SEE THE FLOW BETWEEN THE
CATEGORIES, AND YOU MIGHT SEE
SOMEBODY GOING FROM 1 CATEGORY
TO THE OTHER AND THE WIDTH OF
THE BAR SHOWS HOW MANY PEOPLE
MOVED FROM CATEGORY TO CATEGORY.
SO THEN WE LOOKED AT DEPRESSIVE
SYMPTOMS ALSO AND WE FOUND THAT
57% HAD DEPRESSION AT ANY TIME
POINT IN THE FIRST YEAR WE SAW
THAT 39% HAD AN ANXIETY AT ANY
TIME POINT AND KNAP YOU SEE THE
MOVEMENT HERE WITH THE VARIOUS
CATEGORIZATION, AND AND THEY'RE
PRETTY STABLE FOR THE MOST PART
AND SIGNIFICANT AT ANY TIME
POINT AND AGAIN HERE YOU SEE ON
THE BRIEF PAIN INVENTORY
CHARACTERISTIC PAIN WITH VERY
FEW HAVING PAIN BUT DEFINITELY
MANY HAVING MILD TO MODERATE
PAIN IN THE 50 YEAR, SO HERE
FROM THE SAME STUDY AND THIS IS
THE REFRERNTION IF YOU WANT IT,
PUBLISH INDEED 2022, THIS IS A
THEN DIAGRAM OF SYMPTOM CO
OCCURRENCE IN THE FIRST YEAR SO
LET ME EXPLAIN KIND OF HOW THIS
DIAGRAM WORKS EACH VALUE THAT
YOU SEE REFLEBLGS THE% OF ALL
THE TIME POINTS WITH CLINICALLY
SIGNIFICANT SYMPTOMS, GROUPED BY
CRUCIATE LIGAMENTNIQUE SYMPTOMS
AND COMBINATIONS AND CATEGORIES
MUTUALLY EXCLUSIVE AND SOME UP
TO A HUNDRED% SO WHAT YOU SEE
HERE IS THAT ONLY 23% HAD NO
SYMPTOMS IN THE FIRST YEAR.
AND A LOT OF CO OCCURRING
SYMPTOMS, SO REALLY THIS TELLS
US IS THAT IT'S MORE COMMON IN A
MESS TO HAVE MULTIPLE SYMPTOMS
THAN JUST 1 ISOLATED SYMPTOM AND
YET WHERE THIS MATTERS FOR
TREATMENT IS SO OFTEN TREATMENTS
ARE FOCUSED ON 1 THING, A
DEPRESSION TREATMENT, A FATIGUE
TREATMENT, A PAIN TREATMENT AND
YET WHEN PEOPLE HAVE DEPRESSION
THEY'RE VERY LIKELY TO HAVE PAIN
AND FATIGUE OR ANXIOUS AND
SIMILARLY IF SOMEONE HAS PANE
THEY'RE VERY LIKELY TO HAVE
DEPRESSION, SLEEP DISTURBANCE,
ET CETERA.
SO NOW I HAVE 1 MORE SLIDE I
WANT TO SHARE WITH YOU FROM AN
NIH STUDY, WE'RE IN YEAR 4.
THIS IS AN OBSERVAL STUDY
LOOKING AT OPTIMIZING DETECTION
AND PREDICTION OF PEOPLE WITH
MS, THIS IS FUNDED BY NIH, AS I
MENTIONED AND IT'S -- IT WAS
AWARDED TO THE 2 MULTIPLE PIs,
DR. ANAKRATZ AND NORA FRITS, AND
THIS IS A SITE TO STUDY, AND
IT'S REALLY KIND OF BASED ON THE
IDEA THAT -- OR THE CONCERN THAT
MEASUREMENT OF COGNITIVE
FUNCTIONING IS REALLY LIMITED BY
RELIANCE ON CROSS SECTIONAL DATA
OR NEUROPSYCHOLOGICAL TESTS
WHICH REALLY ARE JUST 1 SHOT OR
1 MEASUREMENT IN TIME AND THEY
REALLY FAIL, -- THEY'RE USEFUL
IN CLINICAL PRACTICE AND
RESEARCH,A THEY REALLY FAIL TO
CAPTURE THAT DAY-TO-DAY AND
WITHIN DAY THAT VARIABILITY THAT
SO MANY PEOPLE REPORT IN THEIR
COGNITIVE FUNCTIONING.
AND SO REALLY TO GUIDE OUR
UNDERSTANDING AND TO BE ABLE TO
INTERVENE SOONER WITH MORE
TARGETED TREATMENTS, WE STARTED
-- APPLIED FOR AND GOT IT GRANT
TO STUDY THIS AND SO WHAT YOU
SLEEP APNEA --
SEE HERE IS A DESCRIPTION OF
DATA COLLECTION AND THE AIMS ARE
DETERMINE IF AMBULATORY ASSESS
WANTS ARE SETTLING IN COGNITIVE
FUNCTION AND ALSO LOOK AT
MODIFIABLE FACTORS SO WE'VE
ENROLLED, I BELIEVE IT'S 300 AND
-- OR SORRY, 302 PEOPLE AND
ADDED FIRST THEY COME IN FOR A
LAB VISIT EVERY YEAR AND WE
CURRENTLY FINISHED OUT YEAR 3
AND COME IN FOR A SINGLE SESSION
AND SURVEYS AND PROMISE MEASURES
AND NEUROPSYCHOLOGICAL TESTS,
THEY DO SYMPTOM REPORTING,
FUNCTION AND THEN THEY DO
PHYSICAL TEST PERFORMANCE.
THEN THEY GO FOR A 14 HOME DAY
MONITORING WHERE WE HAVE THEM
COMPLETE ECOLOGICAL MOMENTARY
ASSESSMENTS OR EMAs THROUGH
THEIR SMART PHONES WHERE THEY
REPORT ON PAIN, FATIGUE, MOOD
STRESS, PERCEIVED COGNITIVE
FUNCTION, ET CETERA AND ALL IN
KIND OF THAT MOMENT WE HAVE THEM
ALSO TAKE COGNITIVE TESTS THAT
ARE BASED ON THE SMART PHONE AT
4 INTERVALS PER DAY FOR THAT 14
DAY PERIOD AND THESE ARE THE 3
TESTS HERE, PROCESSING SPEED,
WORKING MEMORY AND EXECUTIVE
FUNCTIONING.
AND WE'RE ALSO COLLECTING ACCEL
ROMETRY WHICH IS CONTINUOUS
DURING THAT 14 DAY PERIOD, BOTH
SLEEP AND DAY TIME ACTIVITY.
AND WE'VE JUST BEGUN TOOONALIZE
THIS DATA BUT WE'RE FINDING
INTERESTING THINGS SO FAR AND 1
OF THE THINGS WE'RE FIND SUGGEST
THAT THE DATA FROM THIS KIND OF
MORE SENSITIVE MEASUREMENT, THIS
WHOLE MONITORING WE'RE FINDING
IT'S REVEALING UNEXPECTED
FINDINGS SO FOR EXAMPLE, RESULTS
OF MULTILEVEL MODELS INDICATE
SYMPTOMS AND SYMPTOM BURDEN ARE
INFLUENCE FOR COGNITIVE
PERFORMANCE, SO FOR EXAMPLE,
PROCESSING SPEED WAS WORSE WHEN
PEOPLE TBELT MORE FATIGUED OR
TRESESSED IN THE MOMENT AND WHEN
THEY HAD HIGHER OVERALL PAIN
LEVEL ANDS THIS IS PROCESSING
SPEED OBJECTIVELY MEASURED.
WE ALSO FOUND THAT WORKING
MEMORY DECLINED WITH MOMENTARY
FATIGUE, AND HIGHER PAIN LEVELS
OVERALL AND THAT PERCEIVED
COGNITIVE FUNCTION WAS LOWER
DURING TIMES OF HIGHER PAIN,
FATIGUE, DEPRESSION AND STRESS
AND WITH MORE PERSISTENT
FATIGUE, SO ALL IN ALL I SHARE
THIS TO YOU JUST TO SHOW HOW
COMPLEX PEOPLE, THIS EXPERIENCE
IS FOR PEOPLE WITH MS FIRST OF
ALL BECAUSE THEY'RE LIVING WITH
NOT JUST PHYSICAL SYMPTOMS BUT
COGNITIVE SYMPTOMS AS WELL AND
THAT THESE ALL INTERACT WITH
PAIN AND FATIGUE PLAYING VERY
IMPORTANT ROLES.
OKAY, SO NOW I WANT TO TALK
ABOUT THE HEART OF MY TALK, THE
EVIDENCE FOR BEHAVIORIAL
INTERVENTIONS FOR PAIN AND
FATIGUE.
AND HERE'S A QUOTE FROM SOME
KNOW WHO COMPLETED 1 OF OUR
INTERVENTION TRIALS WHERE THEY
GOT THIS PERSON GOT MINDFULNESS
BASED STRESS REDUCTION AND THEY
SAID, YOU KNOW IT DOESN'T TAKE
AWAY MY MS BUT IT MAKES IT SO
MUCH MORE BEARABLE, I FEEL LIKE
I CAN GET MY LIFE BACK.
AND THAT'S REALLY THE GOAL OF
OUR INTERVENTIONS.
SO IF WE ZOOM OUT TO WHAT WE
KNOW ABOUT CHRONIC PAIN IN
GENERAL, WE KNOW THAT
BEHAVIORIAL AND BY BEHAVIORIAL
I'M REFERRING TO COGNITIVE
BEHAVIORIAL THERAPY OR CBT,
MINDFULNESS AND BASED THERAPIES
AND ACCEPTANCE AND COMMITMENT
THERAPY.
THOSE ARE THE 3 THAT HAVE THE
MOST EVIDENCE BEHIND THEM WITH
MULTIPLE ANALYTIC REVIEWS AND
MANY, MANY CLINICAL TRIALS
SHOWING THAT IN ACROSS A BROAD
RAINCHL OF CHRONIC PAIN
POPULATIONS OUTSIDE REHAB
POPULATIONS, THAT THESE
THERAPIES HAVE DEMON TRAITED
EFFICACY FOR IMPROVING PAIN
OUTCOMES, INCLUDING PAIN
INTENSITY, ALTHOUGH THAT'S 1
OUTCOME THAT SOMETIMES IS NOT --
DOESN'T ALWAYS RESPOND BUT MANY
TIMES DOES BUT PAIN,
INTERFERENCE, MOOD AND OTHER
SYMPTOMS LIKE SLEEP AND FATIGUE.
SO WE KNOW ALL THESE THINGS
DON'T WORK FOR EVERYBODY BUT
THEY WORK IN REDUCING THESE IN
OTHER POPULATIONS BUT WHAT ABOUT
MS.
BEFORE I TALK ABOUT IT, IN CASE
ANYONE HERE DOESN'T KNOW WHAT
COGNITIVE BEHAVIORIAL THERAPY
IS, IT'S THE MAIN OR MOST
STUDIED TYPE OF PAIN MANAGEMENT
AND IT'S BASED ON THE WHYED THAT
WHAT WE CAN DO INFLUENCES HOW WE
FEEL AND FUNCTION EMPLOY COMMON
INGREDIENTS INCLUDE INSTRUCTION
AND PRACTICE AND RELAXATION
TRAINING, HELPING PEOPLE TO
IDENTIFY AND CHANGE UNHELPFUL
THINKING, SPOTS THAT INCREASE
THEIR STRESS AND THEIR
SYMPATHETIC AROUSAL AND
BEHAVIORIAL STRATEGIES SUCH AS
LEARNING HOW TO PACE, HOW TO
COPE AND HOW TO STILL STAY
ACTIVE SOCIALLY, PHYSICALLY
DESPITE PAIN OR FATIGUE.
SO THIS IS JUST AN EXAMPLE FROM
1 OF OUR WORKBOOKS THAT WE USED
IN PEOPLE WITH MS, IT TALKS
ABOUT SOME OF THE SKILLS HERE AT
THE TOP THAT THEY LEARN, AND
THEN KIND OF HOW WE TRY TO
REALLY HELP THEM UNDERSTAND HOW
BEHAVIORS, BODY THOUGHTS AND
EMOTIONS REALLY ARE ALL
INTERACTING AND HOW THEY PLAY A
ROLE AND THAT OUR TREATMENTS --
TREATMENT STRATEGIES AT LEAST
TARGET EACH OF THESE THINGS.
SO THE FIRST STUDY I DID IN MS,
O 1 OF THE FIRST STUDY WAS WAS
WHAT WE CALL THE TAKE CHARGE
TRIAL.
IT WAS MULTISYMPTOM PAIN
MANAGEMENT WITH PEOPLE WITH MS
WHERE WE ENROLLED 163 PEOPLE
WITH MS, AND THIS WAS I THINK
AROUND 2010 WHEN WE STARTED WE
ENROLLED THEM INTO A TRIAL WHERE
THEY RECEIVED 1-1, 45 60 MARKED
FOR IDENTIFICATION MINUTE
SESSIONS AND THEY HAD TO HAVE
CHRONIC PAIN OR MILD PATHWAY
GIVES FEEING OR DEPRESSION, THEY
JUST HAD TO HAVE 1 OF THE 3.
AND THE TREATMENT WAS DELIVERED
SIMPLY BY TELEPHONE OR Ph.D.
OR A SOCIAL WORKER.
AND THEY COMPLETED 8 SESSIONS
WITH 2 BOOSTER SESSIONS OF ABOUT
20 MINUTES EACH IN THE SESSIONS
AVERAGED AROUND 50-60 MINUTES
EACH AND HERE'S KIND OF THE MAIN
FINDING, WE FOUND THAT 47% HAD A
CLINICALLY MEANINGFUL CHANGE IN
PAIN INTERFERENCE, WHICH MEANS
THAT THEY HAD A REDUCTION OF AT
LEAST 30% IN PAIN INTERFERENCE
FROM BASE LINE TO THE PRIMARY
EPPED POINT WHICH WAS POST
TREATMENT.
AND THEN, LET'S SEE 50% IN
FATIGUE IMPACT WAS ALSO -- WHICH
WAS A 10-POINT REDUCTION OF
FATIGUE SEVERITY SCALE, SO 50%
HAD A CLINICALLY MEANINGFUL
CHANGE IN FATIGUE IMPACT AND
THESE IMPROVEMENTS NOTABLY WERE
DURABLE AT 6 AND 12 MONTHS, SO
PEOPLE IMPROVED AND THEY STAYED
IMPROVED.
WE ALSO FOUND THAT OTHER
OUTCOMES ALSO IMPROVED SO WE
LOOKED AT OTHER THINGS LIKE
NEGATIVE AFFECT WHICH DECREASED.
POSITIVE AFFECT INCREASE.
SELF-EFFICACY OR CONFIDENCE FOR
MANAGING MS IMPROVED.
THEIR SATISFACTION WITH SOCIAL
ROLES IMPROVED AND RESILIENCE
INCREASED AND THIS IS AGAIN IN
THE CONTEXT OF THESE PEOPLE
HAVING MS FOR MANY, MANY YEARS
WHICH MEANS THEY PROBABLY HAVE
FATIGUE AND PAIN FOR MANY YEARS
AS WELL.
THE OTHER THING WE FOUND IS THAT
TREATMENT ADHERENCE TO THIS
TELEHEALTH WAS VERY HIGH, 86%
COMPLETED 7 OF THE 8 SESSIONS.
SO VERY -- IF I WORKED IN
CLINICS BEFORE, I RARELY HAVE
SOMEONE SHOW UP FOR 8 FULL
SESSIONS OF 8 SESSION TREATMENT
JUST DUE TO PAIRIERS OF GETTING
THERE, THAT CHANGED OF COURSE
WITH COVID NOW THAT TELEHEALTH
IS MUCH MORE COMMON AND
ACCESSIBLE.
WE FOUND THAT TREATMENT WAS VERY
HIGH, WORKING ALLIANCE, THE
RELATIONSHIP BETWEEN THE
THERAPISTS AND THE PARTICIPANT
WAS VERY HIGH, AND 75% OF THE
SAMPLE DESCRIBED TELEPHONE
DELIVERY AS AN IMPORTANT BENEFIT
TO TREATMENT.
SO IT WAS REALLY AN ACCEPTABLE
FORM EVEN THOUGH IT WAS VERY
SIMPLE AND AGAIN, THIS WAS DONE
BEFORE ZOOM, BEFORE TEAMS AND
BEFORE TELEHEALTH WAS COMMONLY
USED.
I WANT TO TURN HOW NOW TO
FATIGUE TRIAL WE DID, WITH
DOCTORS AND COLLEAGUES AT
MICHIGAN.
WE DID A PC ORI FUNDED TRIAL
COMPARING THE EFFECTIVENESS OF
CBT FOR FATIGUE, MEDAFIDEL,
WHICH IS A WEIGHT REGULATING
MEDICATION IN PEOPLE WITH MS AND
THE COMBINATION OF THE 2 FOR
TREATING MS AND THIS WAS A
PRAGMATIC COMPARATIVE
EFFECTIVENESS TRIAL WHERE PEOPLE
WERE RANDOMIZED TO EITHER THE
CBT, MODAFINIL OR COMBINATION OF
THE 2.
AND THEN THEY DID A VARIETY OF
OUTCOME ASSESSMENTS, I DON'T
HAVE TIME TO GET INTO BUT IT
INCLUDED BOTH THE 7 DAY HOME
MONITORING PERIOD AS WELL AS WEB
BASED SURVEYS AND WE FOLLOWED
THEM FOR UP TO 24 WEEKS.
AND WE REDICTED THAT THE
COMBINATION TREATMENT WOULD BE
SUPERIOR TO THE OTHER 2 BUT WE
WERE IN FACT, WRONG, HERE WHAT
YOU SEE ARE THE 3 DIFFERENT
ARMS, WITH AGAIN THE COMBO
GETTING BOTH OF THEM, WHAT YOU
SEE IS THAT AT 12 WEEKS, ALL 3
IMPROVED AND INTERESTINGLY, CBT
IN THAT CONDITION, CONTINUED TO
IMPROVE EVEN THOUGH TREATMENT
ENDED AND YOU KNOW WE SURMISED
THEY WERE USING THOSE SKILLS,
STILL SOME OF THEM OVERTIME AND
THAT LED TO THAT.
WE STOPPED THE MODAFINIL,
PATIENTS COULD GET IT FROM THEIR
PRIMARY CARE PROVIDER OR
NEUROLOGIST AND WE STOPPED IT AT
12 WEEKS AND YOU SEE A BIT OF A
REBOUND FOR SOME OF THEM.
SO 65% REPORTED MEANINGFUL
IMPROVEMENTS AND THE BENEFITS
FROM CBT PERSISTED TO 24 WEEKS
AND ALSO, OTHER OUTCOMES
IMPROVED.
THOSE DATA NOT PUBLISHED YET BUT
THINGS LIKE SLEEP, PAIN, MOOD,
THOSE THINGS IMPROVED AS WELL.
AND SOMEONE MENTIONED EARLIER,
PHENOTYPING, WE'VE BEEN
INTERESTED IN TRYING TO FIGURE
OUT WHO RESPONDS TO WHAT
TREATMENTS AND THAL STUDY WE
LOOKED AT TREATMENT AFFECT
MODIFIERS OR MODERATORS AND WE
FOUND 1 KIND OF PRIMARY 1 AND
THAT WAS SLEEP HYGIENE ORE
HABITS MODERATED WHICH WORKED
BETTER SO FOR PEOPLE WHO HAD
POOR SLEEP HABITS, PEOPLE WITH
DISRUPTIVE, STAYING UP TO LATE,
NOT GREAT SLEEP HYGIENE, THEY
DID BETTER WITH CBT,A LONE OR IN
COMBINATION, WHEREAS THOSE WHO
HAD GOOD SLEEP HYGIENE DID
BETTER WITH THE MODAFINIL.
FINALLY, THIS IS JUST 1 OTHER
SLIDE JUST AGAIN, I WANT TO
EMPHASIZE KIND OF A BIGGER WHIH
I WILL MAKE IN A MOMENT.
THIS IS A STUDY WE JUST
COMPLETED, IT IS UNDER REVIEW,
IS ETIPS.
THIS ENROLLED PEOPLE WITH NOT
JUST MS BUT ALSO ENROLLED PEOPLE
WITH TDI, SPINAL CORD INJURY AND
LIMB LOSS, AND WHAT YOU SEE HERE
IS THE OUTCOMES FOR TREATMENT AS
USUAL AND THEN THE E-TIPS BUT
THESE PEOPLE GOT A VERY SIMILAR
TYPE OF CBT TREATMENT WHERE THEY
GOT 8 SESSIONS, TELEPHONE
DELIVERED AT TIMES THAT WORK FOR
THEM, AND IT WAS REALLILY
FOCUSED ON PAIN MANAGEMENT AND
REALLY FOCUSED ON HOW TO ADAPT
TO PAIN MANAGEMENT STRATEGIES TO
WHERE PEOPLE ARE EMPLOYED WHERE
PAIN CAN INTERFERE WHETHER IT'S
AT-WORK OR QUALITY OF LIFE
OUTSIDE OF WORK.
AND WE FOUND THAT THOSE WHO WERE
ASSIGNED TO THE CBT E-TIPS
INTERVENTION HAD A STATISTICALLY
AND CLINICALLY SIGNIFICANT
REDUCTION IN PAIN, INTERFERENCE
AT POST TREATMENT WHICH IS OUR
PRIMARY END POINT RELATIVE TO
USUAL CARE AND THAT THEY
CONTINUED TO SHOW BENEFITS UP TO
6 MONTHS LATER AND WE FOUND THAT
ALL THESE SECONDARY OUTCOMES,
EXCEPT PAIN INTENSITY, THAT 1
DIDN'T IMPROVE, BUT ALL THE
OTHER THINGS, FATIGUE, SLEEP,
PHYSICAL FUNCTION IMPROVED AND
REALLY THOSE AFFECTS WERE
DURABLE OVER TIME.
SO THEN WHERE DOE WE GO FROM
HERE?
I WANT TO RESPOND A FEW MINUTES
ON THIS, I SHOULD MENTION THAT I
PRIMARILY PRESENTED RESULTS FROM
CBT, BECAUSE THAT'S WHERE I'VE
DONE THE MOST WORK, THAT'S WHERE
THE MOST EVIDENCE IS, BUT THERE
ARE A FEW OTHER STUDIES OUT
THERE, THAT HAVE SHOWN CBT TO
ALSO BE EFFICACIOUS FOR MS
FATIGUE, IT CERTAINLY HAS BEEN
SHOWN TO BE EFFICACIOUS FOR IN
DEPRESSION FOR PEOPLE WITH MS
APPROXIMATE MINDFULNESS BASED
STRESS REDUCTION AND COGNITIVE
THERAPY HAVE ALSO SHOWN BE TO BE
EFFICACIOUS FOR A VARIETY OF
SYMPTOMS INCLUDING MOOD IN
PEOPLE WITH MS SO I DIDN'T
PRESENT THOSE DATA, NOT ALL
THOSE STUDIES I JUST MENTIONED
WERE DONE BY ME, BUT I WANTED TO
KIND OF GET IN THE HEART OF A
FEW STUDIES TO KIND OF SHOW YOU
KIND OF WHAT WE LOOK AT AND HOW
THEY WORK.
SO WHERE DO WE ANY FROM HERE?
WELL, THIS IS ALSO SOMETHING I
HEAR A LOT WHEN I TALK TO OUR
COMMUNITY ADVISOR SAYS, WHEN I
TALK TO PEOPLE WITH MS, THEY SAY
THINGS LIKE I KNOW FROM MY
DOCTOR THERE ARE TREATMENTS BUT
IT'S HARD TO GET CONNECKED TO
THEM IN A WAY THAT WORKS FOR ME.
AND YOU KNOW THERE'S A LOT OF
CHALLENGES TO EVIDENCE BASED
PAIN CARE AND FATIGUE CARE FOR
THAT MATTER THAT ARE NOT JUST
FOR REHAB POPULATIONS, THIS IS
FROM A STUDY BONE BY BETH DARNEL
AT STAND PORD FORD WHERE HE LED
A TEAM DOING A GLOBAL NEEDS
ASSESSMENT FOR PAIN IN GENERAL.
SO IT WASN'T SPECIFIC TO REHAB,
IT THEY FOUND A LOT OF THINGS
THAT WERE PRETTY CONCERNING
BECAUSE THIS WAS DONE, I THINK
IN PUBLISHED IN 2016 SO MAYBE
IT'S 10 YEARS OLD BUT I DON'T
THINK WE MOVED THESE STATISTICS
THAT MUCH BASED ON WHAT
LITERATURE I'VE SEEN IN MY OWN
EXPERIENCE.
SO IN PEOPLE IN GENERAL, 37% OF
PEOPLE WITH PAIN WERE NOT AWARE
OF NONPHARMAICOLOGGIC PAIN
TREATMENTS.
SEVENTY-TWO% OF PAIN PHYSICIANS
REPORTED INSUFFICIENT PAIN
THERAPISTS SO NOT SUFFICIENT
WORKFORCE OF PEOPLE THEY COULD
REFER TO LEARN THESE PAIN AND
SELF-MANAGEMENT INTERVENTIONS
AND THEN EVEN WITHIN, IF YOU
LOOK AT WITHIN PSYCHOLOGISTS OR
MENTAL HEALTH, SOCIAL WORKERS
THEY SURVEY THEM, ONLY 12% FELT
ADEQUATELY TRAINED TO TREAT
PAIN.
THIS IS SOMETHING I NOTICE IN MY
PRACTICE.
PEOPLE COME IN AND THEY'VE BEEN
SEEING A GREAT THERAPIST IN THE
COMMUNITY, COGNITIVE BEHAVIORIAL
THERAPY MIEBDFULNESS AND I HAVE
CHRONIC PAIN AND I SAID HOW ARE
YOU USING THEM MANY OF THEM THE
FIRST TIME THEY THOUGHT OF THAT.
THEY'RE NOT BEING TAUGHT HOW TO
USE THESE TECHNIQUES THAT
THEY'RE LEARNING WITH THEIR PAIN
FATIGUE AND OTHER SYMPTOMS SO I
THINK THAT'S A REAL OPPORTUNITY
GAP BUT ALSO AN OPPORTUNITY FOR
IMPROVEMENT AND THEN 35% OF
ARMPs THEY SURVEYS WERE UN
AWARE OF PAIN.
WE DID A 2024 NATIONAL SURVEY
AND FEWER OF 10% OF THOSE IN OUR
VUR VEY HAD WHO HAD BEEN
REPORTED USE OF ANYTHING LIKE
MINDFULNESS, RELAXATION, ANY
OTHER TECHNIQUES WHRKS ASKED
ABOUT BARRIERS, IT WAS AGAIN A
LACK OF FAMILIARITY THAT THESE
THINGS LIKE WORK AND THEN ALSO
REALLY LACKING WHERE TO GO TO
GET IT AND THEN CONCERNS ABOUT
COST.
WE ALSO WE JUST COMPLETED A
QUALITATIVE INTERVIEW, SO SAY WE
JUST COMPLETE CODING THEM OF
PROVIDERS AND WE KIND OF HEARD
SIMILAR THEMES THAT THEY REALLY
SEE A LACK OF TRAINED PROVIDERS,
COSTS INSURANCE AND ACCESS, LIKE
I DON'T KNOW WHERE TO REFER
PEOPLE FOR THESE KINDS OF CARE.
SO OF COURSE AS YOU ARE WELL
AWARE, IF YOU EVER OPENED UP
ANY, YOUR PHONE OR ANYTHING YOU
SEE, REALLY OUT THERE IN THE
MEDIA, THE DIGITAL INTERVENTIONS
ARE KIND OF THIS NEXT WAVE, AND
ARE THEY THE SOLUTION, SHOULD WE
REALLY BE LEANING ON DIGIT AT
INTERVENTION SUCH AS THIJS YOU
SEE ON THE SCREEN HERE TO
IMPROVE SYMPTOM MANAGEMENT WITH
PEOPLE IN MS AND OTHER
POPULATIONS.
WELL WE KIND OF THOUGHT ABOUT
THAT, TOO, SO WITH FUNDING FROM
THE D.O.D. WE PUT TOGETHER A
WEBSITE PUT TOGETHER MY MS TOOL
KIT, IT'S THE ONLY CHA I'M AWARE
OF FREELYY AVAILABLE MS TOOL KIT
OUT THERE AND WE DEVELOPED IT IN
COLLABORATIONS IN PEOPLE WITH MS
AND HAS A NUMBER OF WORK SHEETS,
VIDEOS, ALL SORTS OF TOOLS ON
THAT TO HELP PEOPLE MANAGE THE
VARIETY OF SYMPTOMS THEY
EXPERIENCE WITH GUIDANCE ALSO
FROM THEIR FAMILY AND FREBDS IF
THEY WANT TO SHARE THAT WITH
THEM AND WE DID A PILOT STUDY
WHICH IS REALLY MORE OF A
FEASIBILITY STUDY BUT WE DID
FIND THAT PEOPLE BENEFITED FROM
THIS.
WE WERE KIND OF SURPRISED IN
FACT BECAUSE I THINK IT WAS
SOMETHING LIKE OH WHAT WAS IT,
IT WAS SOMETHING LIKE, 46% OF
PEOPLE HAD A CLINICALLY
SIGNIFICANT IMPROVEMENT IN PAIN
APPEARANCE, 38% IN TAKEN--THEY
TEAGUE BUT WHAT I WANT YOU TO
PAY ATTENTION TO HERE IS LOOK
HOW MANY PERCENTAGE OF PAGE
VISITS AND AVERAGE TIME IN
MINUTES THEY SPENT ON THESE AND
THESE WERE THE DIFFERENT STEPS
OR COMPONENTS OF IT.
AND AS CAN YOU SEE, THEY'RE NOT
SPENDING A LOT OF TIME ON THESE
DIFFERENT STEPS AND THEY'RE
VISITING THEM BUT SOME OF THEM
DON'T GET A LOT OF TRACTION AND
THIS IS IN A SAMPLE OF 20 PEOPLE
SO EVEN THOUGH PEOPLE REPORTED
BENEFITING -- IT'S A PILOT STUDY
SO WE HAVE TO BE CAREFUL TAKING
TOO MUCH OUT OF THAT BUT PEOPLE
ARE STILL NOT USING THIS MUCH SO
WE DEVELOPED A COACHED VERSION
WHERE A BRIEF 15 MINUTE
COACHING, THEY WOULD GET
COACHING TO HELP THEM STICK TO
THE PROGRAM AND CERTAINLY IN
TERMS OF OUR DIGITAL
INTERVENTION TO SOLUTION, WELL,
WE KNOW THAT ADHERENCE VARIES
WIDELY ACROSS THESE, THIS ISN'T
JUST COMOON ACROSS MS, THIS IS
DIGITAL OR HEALTH OUT THERE AND
THAT COACHING REALLY SUPPORTS
IMPROVED ADHERENCE AND OUTCOMES
AND SOLE REALLY EAR WE'RE AT A
STAGE, WE'RE KIND OF UNCLEAR HOW
TO BEST INTEGRATE THESE
INTERVENTIONS AND CLINICAL CARE.
AND I WOULD ARGUE ABOUT THIS IS
WHAT I SEE AS THE FUTURE AND I
WILL WRAP UP HIRE IN JUST A
MINUTE.
I THINK REALLY WE NEED TO THINK
NOT AS ONE-SIZE-FITS-ALL BUT
THAT WE NEED A CONTINUUM OF
OPGS.
THERE WILL BE SOME PEOPLE THAT
REEL KEEPSAKESLY DO QUITE WELL
WITH JUST ON THEIR OWN WITH
SELF-DIRECTED PAIN AND FATIGUE
CARE.
THERE'S OTHERS WHO WILL DO WELL
WITH CLASSES, GROUPS, SOME KIND
OF ONLINE CONNECTION, LEARNING
OF SKILLS AND THEN I STILL THINK
PEOPLE WHO WILL BENEFIT MORE BY
HAVING THIS 1 TO 1 MORE
INTENSIVE THERAPY OR
INTERVENTION.
STILL MIGHT ONLY BE 8, 10
SESSIONS BUT I THINK THAT'S
NEEDED BUT SO I THINK WE REALLY
NEED TO BE LOOKING AT TRYING TO
PREDICT WHO BEST BENEFITS FROM
THESE DIFFERENT LEVELS WITHIN
THE CONTINUUM.
BUT THE OTHER OPPORTUNITY I
REALLY SEE IS NOT JUST THE TYPE
OF THERAPY BUT ALSO WE NEED TO
DO A BETTER JOB OF EQUIPPING
PROVIDERS TO DISCUSS, RECOMMEND
AND PROVIDE SELF-MANAGEMENT
TOOLS AND I WOULD ARGUE WE NEED
TO HELP THE MS COMMUNITY ASK FOR
THESE TYPES OF THINGS AND SEEK
THESE TYPES OF THINGS OUT
BECAUSE WHEN THEY DO FIND THEM
NOT ALL BUT MANY BENEFIT.
I DON'T KNOW THAT I HAVE A LOT
OF TIME BUT I WANT TO SAY THAT
THE FUTURE ALSO INCLUDES THESE 3
BRIGHT EARLY CAREER FACULTY AT
THE UNIVERSITY OF WASHINGTON.
DR. LINDE KNOLLS HAS THE K23
FUNDED BY NCMRR, UTILIZING A
NOVEL METHODOLOGY TO EXAMINE
UNIQUE AND SINNER GESTIC EFFECTS
OF CBT COMPONENTS.
SO SHE'S TRYING TO OPTIMIZE HOW
DO WE GETTER MORE EFFICIENT
TREATMENTS SO THAT WE CAN REAL
LE GET MORE BANG AND REACH MORE
PEOPLE WITH THEM.
DR. SARAH SIMOONS IS A
PODIATRIST TO STUDYING PHYSICAL
ACTIVITY TO PROMYELIN REPAIR AND
USING SPINAL CORD STIMULATION TO
IMPROVE HAND ARM FUNCTION,
FORRICISM TOPS LIKE FATIGUE AND
PAIN ALSO AND MY SOON TO BE POST
DOC, ERIN MISTRETTA, SHE HAS A
K23 UNDER REVIEW AND THAT'S HENS
MY QUESTION EARLIER AND SHE'S
LOOKING AT HOW DO YOU USE
REALTIME TECHNOLOGY NUDGES VIA
WEARABLES OR SMART PHONE TO GET
PEOPLE TO PRACTICE THE THINGS
THAT BENEFIT THEM LIKE
MINDFULNESS, MEDITATION.
SO IN CONCLUSION, YOU KNOW LIKE
MANY REHAB POPULATIONS,
INDIVIDUALS WITH MS OFTEN MANAGE
MULTIPLE CO OCCURRING SYMPTOMS
THAT INFLUENCE 1 ANOTHER AND
THAT BEHAVIORIAL TREATMENT WHEN
IS DELIVERED IN SUCCESSFUL
PATIENT-CENTERED WAY TEND TO
IMPROVE NOT ONLY TARGET SYMPTOM
BUT OTHER SYMPTOMS AS WELL AS
FUNCTIONING.
SO IT MAKES ME THINK, INSTEAD OF
JUST TREATING -- WELL MAYBE YOU
JUST NEED TO TREAT FATIGUE OR
PAIN BUT WE NEED TO BETTER
UNDERSTAND WHAT TO TARGET AND
HOW TO TARGET IT AND WITH WHAT.
I BEING IT'S TIME MOVE AWAY FROM
EFFICACY STUDIES AND BEHAVIORIAL
INTERVENTION FOR WHO IS HOW,
ALONG THE LINES OF OPTIMIZING
TREATMENTS AND ADVANCING
MECHANISMS AND PRECISION
MEDICINE.
AND I THINK THAT WE NEED TO BE
STUDYING DIGITAL HEALTH AND
HEGHT INTERVENTIONS, THEY ARE
PROMISING BUT I DON'T THINK WE
CAN ASSUME THEY'RE THE ANSWER
AND THAT WE CAN RELY ON THEM TO
MEET THESE GAPS THAT ARE OUT
THERE IN TERMS OF ACCESS.
I BEING WE NEED TO LOOK AT STEP
CARE MODELS OR SMART DESIGNS
WHERE YOU LOOK TO SEE IF YOU
START WITH A LOW INTENSITY AND
IF PEOPLE DON'T GET BETTER THEY
MOVE UP.
AND FINALLY I THINK WE NEED TO
PARTNER WITH THE MS COMMUNITY.
THAT WILL BE WHAT MOVES US
FORWARD FROM EFFICACIOUS
INTERVENTIONS TO ACTUALLY
EEIVETTIVE INTERVENTIONS IN THE
COMMUNITY.
SO THANK YOU FOR YOUR TIME AND
ATTENTION.
WHAT QUESTIONS DO YOU HAVE?
>> THANK YOU DAWN.
ABSOLUTELY.
WE ARE OPEN FOR QUESTIONS.
I APOLOGIZE MY SON WHO IS IN
COLLEAGUE AND RARELY, RARELY
TEXTS ME, HE'S THE 1 PERSON WHO
CAN GET BY MY -- WHEN I HAVE A
DO NOT DISTURB, SO HE WAS
TEXTING ME A LOT AT 1 POINT.
TUITION'S DUE.
SO RALPH?
>> WHEN YOU TALK ABOUT TRYING TO
TARGET WHICH PATIENTS IT WORKS
BEST FOR, SOMETIMES PEOPLE FOCUS
ON THE TRAJECTORY OF THEIR MS,
THAT DOES HELP YOU AT ALL IN THE
TERMS OF TRAJECTORY.
IS THAT PREDICTIVE FOR YOUR
STUDIES?
>> YOU KNOW SURPRISINGLY SO FAR
IT HASN'T, SO IN THE TAKE CHARGE
TRIAL I MENTIONED I PUBLISHED A
SECOND PAPER FOLLOWING UP
LOOKING AT KIND OF BASE LINE
FACTORS PREDICTING RESPONSE TO
TREATMENT, AND WE REALLY
ELECTRICKED AT THINGS LIKE
DISEASE, SEVERITY, DISEASE TYPE,
YOU KNOW PROGRESSIVE VERSUS
RELAPSING FORMS, WE LOOKAD
DEMOGRAPHICS AND NOTHING CAME
THROUGH AND I THINK THE MESSAGE
THAT HAS COME FROM A FEW OF OUR
STUDIES NOW INCLUDING SOME MARK
JENSEN'S DONE WITH MINDFUL EXPNS
HYPNOSIS IS THAT WE'RE FINDING A
FEW THINGS BUT I THINK WE HAVE
TO BE CAREFUL NOT TO ASSUME
PEOPLE WON'T BENEFIT JUST
BECAUSE THEY'RE IMPAIRED.
BECAUSE WE'RE SEEING PEOPLE WITH
PRETTY SIGNIFICANT COGNITIVE AND
PHYSICAL IMPAIRMENTS WHO WERE
STILL BENEFITING FROM THESE
TREATMENTS.
>> MICHELLE?
>> THANK YOU DAWN FOR THAT
PRESENTATION.
IT WAS VERY EDUCATIONAL.
I ACTUALLY HAVE 2 QUESTIONS.
ONE IS YOU MENTIONED AND I I'M
NOT FULLY FAMILIAR WITH SOME OF
THESE MEASURES, YOU HAD
MENTIONED THAT YOU USE A TOTAL
MFS SCORE AND THAT AT SOME POINT
YOU MENTION A PAIN INTERFERENCE
SCORE, I WONDERED IF YOU COULD
CLARIFY WHAT THOSE ARE MEASURED.
MOST OF TIME I'M FAMILIAR WITH
PEOPLE DOING A VAS PAIN SCALE,
SO WHAT'S THE DIFFERENCE BETWEEN
WHAT YOU'RE DOING AND THAT TYPE
OF SCALE.
>> YEAH, GREAT QUESTION.
SO PAIN INTERFERENCE, WE'VE USED
A COUPLE OF THEM BUT THE MOST
RECENT WE'VE MOVED TO LIKE THE
PROMISE PAIN INTERFERENCE
MEASURE, THAT'S GETTING AT NOT
SO MUCH DOES PAIN HURT BUT MOW
MUCH DOES IT IRPT FEAR WITH
COMMON DAILY ACTIVITIES, MOOD,
SOCIAL ROLES AND FUNCTION.
SAME WITH THE FATIGUE SCALE I
MENTIONED, IT'S THE FATIGUE
IMPACT SCALE AND IT'S REALLY
GETTING AT HOW MUCH DOES FATIGUE
INTERFERE WITH FUNCTION VERSUS
JUST HOW BAD -- HOW FATIGUED ARE
THEY.
>> OKAY.
THAT ACTUALLY HELPS AND THEN THE
OTHER QUESTION I HAD WAS DID YOU
THEN BECAUSE IN ASKING THOSE
QUESTIONS ARE YOU LOOKING AT
ADLs AS A BASIC AS WELL AS
INSTRUMENTAL OR ARE YOU
EXPLICITLY ASKING THEM ABOUT
THOSE TYPES OF ACTIVITIES OR
IT'S JUST KIND OF EVERYDAY
WHAT'S GOING ON?
>> SO SOME OF THOSE MEASURE.
S DO GET AT A DAILY LEVEL OF
ACTIVITIES BUT NOT TO THE DEGREE
IF YOU WERE TO DO ADL A--OH
IDLMEASURES.
>> IS THAT WORTH DOING?
GETTING INTO THE ACTUAL TYPES OF
ACTIVITIES THAT PEOPLE DO ON A
-- LIKE DOES IT AFFECT THEIR
BASIC FUNCTIONING VERSUS THEIR
INSTRUMENTAL LIVING?
YOU KNOW?
>> I THINK THAT'S A GREAT
SUGGESTION ACTUALLY.
YOU KNOW I THINK BECAUSE LIKE
FOR EXAMPLE, ON THE PAIN
INTERFERENCE SCALE THAT WE
COMMONLY USED IT ASKED ABOUT
DOES IT INTERFERE WITH YOUR
ABILITY TO DO HOUSEHOLD
ACTIVITIES, DOES IT INTERFERE
WITH YOUR ABILITY TO GET AROUND,
SO IT GETS AT IT SOME BUT NOT TO
THE FINER DEGREE YOU MIGHT GET
WITH OTHER MEASURES AND THAT
MIGHT BE WORTH LOOKING AT AS
WELL.
>> GREAT.
THANK YOU.
>> ANGEL?
>> THANK YOU LET ME LOWER YOUR
HAND.
THANK YOU SO MUCH FOR THE
WONDERFUL PRESENTATION.
I WAS CURIOUS FROM AN ADVOCACY
PERSPECTIVE, HOW -- WHAT TOOLS
WE CAN USE OR HOW TO SPREAD THE
WORD ABOUT PARTICULARLY THE
DIMINISHITTAL INTERVENTION
SOLUTIONS.
I KNOW FOR MYSELF AND SOMEONE
WHO HAS -- WHO LIVES WITH MS, I
HAVE BEEN PRESCRIBED MEDICATION
FOR FATIGUE OR PAIN BUT I HAVE
NEVER HEARD OF THESE DIGITAL
TOOLS, SO, I WOULD LOVE TO BE
ABLE TO SHARE THAT WITH OUR
ADVOCACY COMMUNITY OR I'M JUST
CURIOUS WHAT'S HAPPENING THERE.
I LOVE THE MY O MASS TOOL KIT
YOU SAID WAS FUNDED THROUGH
CDMRP, SO I JUST WANT TO MAKE
SURE THAT LITTLER PEOPLE THAT
LIVE WITH MS CAN, AND OTHERS CAN
DEFINITELY THESE DIGITAL
SOLUTIONS COULD WORK FOR THE
SPINAL CORD INJURY COMMUNITY AND
OTHER PEOPLE.
>> YEAH, YOU'RE REALLY HITTING
ON THE GAP.
I THINK THERE'S THIS LACK OF
AWARENESS AND A LOT OF TIMES
PEOPLE DON'T GET REFERRED FOR
PAIN OR FATIGUE SELF-MANAGEMENT,
THEY TEND TO GET MEDICATIONS
FIRST AND THEY DON'T GET
REFERRED FOR BEHAVIORIAL
INTERVENTIONS OR SELF-HELP
INTERVENTIONS UNTIL IT'S LIKE
THE LAST RESORT, I HEAR THAT A
LOT FROM PEOPLE, IT'S THE TOOL
OF LAST RESORT, AND I THINK WE
NEED TO GET THESE THINGS TO
PEOPLE SOONER SO THEY CAN LEARN
HOW TO APPLY THEM.
I AM HAPPY TO -- I WOULD LOVE
YOUR IDEAS OFFLINE, I THINK YOU
WOULD BE SOMEONE TO TALK TO, AND
NOW OUR ADVISORY BOARD HAS IT ON
THE MAY MEETING TO BRIDGE THE
GAP IN THE COMMUNITY AND CAN WE
DO IT WITH A KNOWLEDGE CAMPAIGN
AND I WORK WITH MS SOCIETY AND
CAN DO MS ASSOCIATE
ORGANIZATIONS AS WELL TO GET
INFORMATION OUT THERE BUT EVEN
WITHIN OUR OWN MS CENTER,
SOMETIMES I FIND SOME OF OUR
PROVIDERS NTHEY'RE SO BUSY, I
DON'T BLAME THEM, THEY DON'T
REALIZE THEY COULD HIT A SMART
PHRASE ON THE NOTE THAT WOULD
REFER PEOPLE TO THE COOL TOOL
KIT SO WE NEED TO DO A BETTER
JOB AS WELL?
ONE FINAL QUESTION AND THEN WE
GOTTA GO ON TO OUR BREAK.
>> YEAH, SORRY DAWN,
DISCIPLINARY HAVE ANOTHER
QUESTION, YOU MENTIONED THE
STUDY WHERE YOU HAD THE E-TIPS 1
WHERE YOU LOOKED AT OTHER REHAB
GROUPS, TBI, AS WELL AS AMPUTEE.
DID YOU FIND ANY DIFFERENCES IN
HOW THEY EXPERIENCED A
REDUCTION, BECAUSE YOU JUST
SHOWED A GENERAL OUTCOME, WERE
THERE DIFFERENCES BETWEEN AND
ACROSS THESE REHAB GROUPS?
>> NO.
REALLY THEY WEREN'T.
THERE WEREN'T.
WE DID LOOK AT THAT, THERE WAS'
ALSO A STUDY FUNDED, I THINK IT
WAS MY FIRST RO-1 FUNDED BY NIH,
YEARS AGO THAT LOOKED AT 3
DIFFERENT DISABILITY GROUPS AND
SIMILAR TYPE OF CBT FOR PAIN AND
KIND OF COST STUDIES, WE DON'T
SEE THAT THEY REALLY DIFFER BY
DIAGNOSIS, THEY ALSO DON'T
DIFFER BY PAIN.
I DIDN'T GET INTO PAIN TYPES BUT
PEOPLE WITH MS CAN HAVE
NEUROPLASTIC NEUROPATHIC AND
CENTRAL NERVE PAIN.
SO WE FIND THAT OFTEN HAVE
MULTIPLE TYPES OF PAIN AND THAT
THESE INTERVENTIONS, REALLY
THEY'RE TARGETING THINGS THAT WE
THINK PACE OFFICE OF DIVERSITY
OUR FINDINGS SEEM TO KIND OF HIT
ACROSS TYPES OF PAIN AND
POPULATIONS.
NOKAY, SO LET'S BARBARA CAN WE
HEAD OFF IT TO THE BREAK NOW?
>> THANK YOU, THANK YOU DAWN AND
EVERYONE FOR YOUR INTERACTION.
AND SO, YES, WE'RE BACK AT 2:45
>> OKAY, YEAH.
THANKS A LOT EVERYBODY, STAY TUNED!
I AM DELIGHTED TO
INTRODUCE FRANCISCO
VALERO-CUEVAS, PROFESSOR
BIOMECHANICAL ENGINEERING,
AEROSPACE ENGINEERING,
ELECTRICAL AND COMPUTER
ENGINEERING AND COMPUTER SCIENCE
AND BIOPHYSICAL THERAPY AT THE
UNIVERSITY OF SOUTHERN
CALIFORNIA.
HIS RESEARCH AND DEDICATED TO
BEDDING THE BIOMECHANICS
NEUROMUSCULAR CONTROL AND
CLINICAL REHABILITATION OF
COMPLEX NEUROMUSCULAR SYSTEMS
SUCH AS THE HUMAN HAND.
SO, SENSORS AND MUSCLES, THE OWN
SUNG HEROES OF NEUROMUSCULAR
CONTROLS.
FRANCISCO?
>> THANK YOU SO MUCH BARBARA FOR
THAT KIND INTRODUCTION, CAN YOU
HEAR ME OKAY?
-- WHAT IS THERE IMPORTANCE, I
DON'T HAVE DISCLOSURES FOR THAT
PRESENTATION BUT WHY DO SENSORS
IN MUSCLES MATTER.
WELL AS WE KNOW MOVEMENT
DISORDERS THAT ARISE FROM
NEUROMUSCULAR AND MIEWROLOGICAL
CONDITIONS ARE QUITE DIVERSE AND
THEIR MOTOR ASSPEBT SYSTEM OFTEN
WHAT DEFINES THEM AND OF COURSE
WE SAW THE EXCELLENCE TALK ABOUT
PAIN AND THAT'S ANOTHER FORM OF
SENSING BUT MOVEMENT DISORDERS
IN GENERAL ARE CONSIDERED
CATEGORIZED AS PER THEIR AFFECT
ON OUR NATURAL MOVEMENTS.
HOWEVER THERE'S AN OPEN
QUESTION, WHAT ARE THE KRIEWKS
OF SENSORY DEFICITS TO THOSE
MOVEMENT DISORDERS, SO FOR
EXAMPLE, IN STROKE OR CEREBRAL
PALSY OR PARKINSON'S DISEASE,
PERHAPS IT IS A DISRUPTION OF
SENSATION THAT LEADS TO THE
MOVEMENT DISORDER AS OPPOSE TO
JUST A DISRUPTION IN THE MOTOR
SYSTEM, AND THIS IS NECESSARY
FOR ACCURATE DIAGNOSIS AND
TREATMENT.
THIS IS VERY, VERY CRITICAL AND
THEREFORE LET'S TALK ABOUT OUR
SENSES.
OF COURSE WE'RE FAMILIAR WITH
THE 5 TRADITIONAL SENSES OF
TASTE, SMELL, HEARING AND OF
COURSE VISION ALSO HELPS US
NAVIGATE THE WORLD, TOUCH ALLOWS
US TO INTERACT WITH THE WORLD
BUT THERE'S ANOTHER IMPORTANT
BODY SENSE THAT OFTEN GOES
UNSUNG WHICH IS PROPRIMATES O
ACCEPTION AND PROPRIMATES O
ACCEPTION IS WHAT ALLOWS US TO
UNDERSTAND AND KNOW SORT OF THE
STATE OF OUR BODIES.
SO IF WE WORK TO CLOSE OUR EYES
HOW DO WE KNOW IF WE'RE UPRIGHT,
HOW DO WE KNOW IF WE'RE SITTING
DOWN, WHERE OUR FINGERTIP IS, ET
CETERA.
AND HOW DO WE SENSE PROPRIMATES
O ACCEPTION.
IN ADDITION TO THE INNER EAR FOR
BALANCE WE HAVE OTHER SENSORS
CALLED MECHANO RECEPTORS THAT IN
OUR JOINTS AND MUSCLES AND IN
PARTICULAR THE MUSCLES ARE IN
THE ORGAN AND MUSCLE SPENDLES
AND TO GET AN IDEA WHAT THEY DO
SO HERE WE HAVE A SIMPLISTIC
MECHANICAL FIGURE BEING EXTENDED
BY A MUSCLE.
IMPORTANTLY THIS SENSE, THIS
MUSCLE SENSE IS NOT CONSCIOUS.
SO WE DO NOT HAVE CONSCIOUS
ACCESS TO THIS, OF COURSE TOUCH
WE DO BUT NOT THIS TYPE OF
SENSATION MAKING PROPRIOCEPTION
TO TENDONS AND MUSCLES, SO
HERE'S A DETAILED VIEW, ET
CETERA.
BUT JUST TO GIVE YOU A SENSE OF
WHAT THESE SENSORS DO IF WE HAVE
THE SAME EXTENSOR MUSCLE AND WE
WERE TO SAY, FLEX OUR FINGER,
YOU SEE THAT IT REACTS AND BY
DOING THAT THE TRADITIONAL
CLASSICAL EXAMPLE IS A KNEE JERK
REACTION IF YOUR KNEE CAP IS
TAPPED OR MORE PROPERLY YOUR
FEMORAL TENDON THAT THERE'S THIS
STRETCH SENSATION THAT GOES INTO
THE SPINAL CORD THAT MAKES THE
MUSCLE RETRACT AS YOU SEE IN THE
KNEE JERK REACTION, WHILE IT
ALSO ACTUALLY CONNECT TO SILENCE
THE QUOTE-UNQUOTE OPPOSITE
MUSCLE, THE ANTAGONIST MUSCLE SO
THERE IS A VERY WELL KNOWN
CIRCUITRY IN ALL VERTEBRATES AND
AMPHIBIANS THAT WORKS TO ENABLE
BEHAVIOR.
AND SO, JUST ANOTHER CARTOON
VERSION OF THIS CIRCUIT HERE, WE
HAVE THE MECHAN O RECEPTOR
THAT'S IN THE MUSCLE, THE REFLEX
MECHAN O RECEPTOR WHICH IS THE
MUSCLE SPINDLE, WHICH WHEN THE
MUSCLE IS STRETCHED GOES BACK TO
THE ITS OWN ALPHA MOTOR NEURON
AND CAUSES THE STRETCH AND THEN
THE TUNING OF THAT MECHAN O
RECEPTOR OF THE MUSCLE SPINDLE
IS ALSO DONE BY A SMALLER MOTOR
CALLED A GAMMA LOOP,
SOPHISTICATEDY WE WILL BE
BACKING BACK TO THE ALPHA GAMMA
PAIR BUT YOU'RE FAMILIAR WITH
THIS BECAUSE THIS IS WHAT'S
HOLDING YOU UP AGAINST GRAVITY
EACH TOW WE TALK ABOUT IT AS A
STRETCH REFLEX, WHAT WE'RE
REALLY TALKING ABOUT IS A LOW
LEVEL SPINAL CIRCUITRY THAT IS
THERE OPERATING ALL THE TIME,
KEEPING YOU UPRIGHT AGAINST
GRAVITY AND GIVING YOU PROPER
BEHAVIOR.
AND TO THE POINT THAT UPPER
MUSCLE SPINDLE BEHAVIOR IS
THOUGHT TO BE NECESSARY FOR
SMOOTH VOLUNTEERS UNSUPPORTED
TEARY MOVEMENT AND INVOLUNTARY
POSTURES BUT IT'S DISRUPTION IS
THOUGHT TO BE IMPLICATED IN
NEUROLOGICAL CONDITIONS LIKE
CEREBRAL PALSY, PARKINSON'S
DISEASE AND STROKE.
SO THESE ARE VERY, VERY
IMPORTANT CIRCUITS THAT ARE
IMPLICATED IN A VARIETY, IF NOT
MAJORITY OF MOVEMENT DISORDERS.
SO HERE WE NOW HAVE A BIGGER
PICTURE WHERE WE HAVE THE
TRADITIONAL MOTE OR CORTEX AND
SENSORY CORTEX THAT COMMUNICATE
TO THE SPINAL CORD AND OF
COURSE, THE SPINAL CORD SENDS
SIGNALS TO MUSCLES FOR
ACTIVATION, BUT MUSCLES
THEMSELVES SEND THESE SIGNATS
BACK TO THE SPINAL CORD AND THEN
ON TO THE SENSORY CORTEX.
THE QUESTION IS, HOW IS THIS
ORCHESTERATION HAPPENING AND
FUNDAMENTALLY, HOW DO THESE
CONTRIBUTE TO BEHAVIOR AND ALSO
TO DISABILITIES.
SO LET ME JUST GIVE YOU 4 SHORT
EXAMPLES OF KNOWLEDGE THAT WE'VE
BEEN ABLE TO DEVELOP OVER THE
YEARS.
SO 1 OF THEM IS JUST THAT THE
STRETCH REFLEX CIRCUITRY TO
MAINTAIN POSTURE, THIS HAS BEEN
PROPOSED FOR A VERY LONG TIME,
IN FACT, SINCE THE TIME OF SIR
CHARLES SHERRING TON IN 1896,
THROUGH KNOWLEDGE ACCUMULATED BY
PIERROT-DESEILLIGNY, AND BURKE,
AND HE SAID I CANNOT CREATE WHAT
I DO IN THE UNDERSTAND.
SO AS ENGINEERS WE TOOK IT UPON
OURSELVES TO BUILD THESE SYSTEMS
SO WHAT WE USED OR COMPUTER
CHIPS TO SIMULATE NEURONS IN
MOTORS TO SIMULATE MUSCLES AND
THEN SOME MECHANICAL SYSTEMS
CHOOSE TO SIMULATE OUR ANATOMY
AND OF COURSE THERE WAS MY
PLEASURE TO COLLABORATE WITH
PEOPLE LIKE COLLEAGUES AND
STUDENTS AND POST DOCS TO BRING
THIS TO LIFE.
SO WE PUBLISHED THE ABILITY TO
SIMULATE THE STRETCH REFLEXES IN
TUMOR MUSCLES AND HERE AGAIN IS
THAT NEURNEUROMECHANICAL SYSTEM,
IT'S A SYNTHETIC SYSTEM WITH 2
MUSCLES, EACH OF THEM WITH THE
DRIVE TO THE MUSCLE BUT THEN THE
SENSORS COMING BACK TO THEIR
OWN.
AND SO, WE DO THIS IN THE
CONTEXT OF FPGH CHIPS THAT ARE
ALSO SIMULATING SPIKING NEURONS,
ET CETERA.
SO YOU COULD CALL THIS SYNTHETIC
NEUROSCIENCE AND WHEN YOU PUT
THESE SYSTEMS TGHTS, WE'RE NO
LONGER TALKING NECESSARILY ABOUT
THE THEORIES OF MOTOR CONTROL,
BUT WE ACTUALLY CREATE ROUGH
ATOM BUTS THAT IMPLEMENT THESE
CIRCUITS THAT WERE DEVELOPED AND
FINE TUNED BY NATURE OVER
MILLIONS OF YEARS OF EVOLUTION
AND WE SEE THAT THEY ACTUALLY
WORK RATHER WELL AND IN FACT,
YOU COULD EVEN RECORD FROM ANY 1
OF THOSE SIMULATED NEURONS.
THESE NEUROMORPHIC CIRCUITS AND
YOU COULD ACTUALLY HEAR THE
STRETCH REFLEX BECAUSE IT IS
SYSTEM AS IT IS ACTUALLY RIGHT
OFF THE SHELF WORKS.
SO THIS A VERY INTERESTING
CONCEPT BECAUSE NOT ONLY DOES
THIS ALLOW US TO VALIDATE THE
PHYSIOLOGICAL CONCEPTS, AND EVEN
POTENTIALLY SIMULATE
NEUROLOGICAL CONDITIONS, BUT WE
CAN EXTEND THIS AND THEN WE
BECOME THE OPPORTUNITIES OF
NATURE WHERE THESE LESSONS FROM
NATURE ALLOW US TO BUILD
NEURO-ROBOTIC SYSTEMS THAT COULD
USE THESE SPINAL CIRCUITS TO
CREATE ROBOTS THAT INTERACT
GRACEFULLY WITH THE WORLD AND
WITH HUMANS IN EXOSKELETONS, ET
CETERA.
SO, WE'VE WRITTEN ABOUT THIS IN
NATURE MACHINE INTELLIGENCE,
WHERE WE TALK ABOUT BIOROBOTS
AND BRAIN BODY ADAPTATIONS WITH
THE LESSONS FROM NATURE, AND
THIS IS IN COLLABORATION WITH 1
OF MY OPPORTUNITY WHO IS IS AT
THE UNIVERSITY OF CINCINNATI.
SO THE NEW KNOWLEDGE HERE FOR
THE SECOND EXAMPLE IS HOW TO
STRETCH REFLEX CIRCUITS OPERATE
WHEN YOU HAVE MULTIPLE
SCLEROSIS?
SO THIS IS ACTUALLY 1 OF THE
TOPICS I TREAT IN MY TEXTBOOK
FUNDAMENTALS OF NEUROMECHANNICS
WHERE WE HAVE THE SIMPLE SINGLE
JOINT 2 MUSCLE SYSTEM AND WE ARE
ABLE TO UNDERSTAND THOSE FINAL
CIRCUITS.
BUT WHAT HAPPENS WHEN WE HAVE
MULTIPLE MUSCLES CROSSING A
SINGLE JOINT, SAY, AND THIS
JOIPT WANTS TO MOVE?
SO AS YOU KNOW WHENEVER THE
JOINT PROITATES THE TENDON COULD
LENGTHEN IF IT'S 1 OF THOSE
ESSENT RICKLY CONTRACTED
MUSCLES, HOWEVER, WHAT IF YOU
HAVE 2 OR 3 MUSCLES THAT ARE
LENGTHENING AT THE SAME TIME?
WELL, IT TURNS OUT IF 1 OF THOSE
DOESN'T IMMEDIATELY LEPGHTEN,
THE MOVEMENT IS STOPPED.
SO WHAT THIS DOES IS IT EXTENDS
THIS NOTION OF RECIPROCAL
INHIBITION WHERE YOU TALK ABOUT
THE ANTAGONIST AND TO ACTUALLY
TALK ABOUT HOW COORDINATION OF
REFLECT PATHWAYS AMONG SINNER
GESTIC MUSCLES IS ALSO VERY
IMPORTANT MEANING THAT WE ARE
TALKING ABOUT HOW THE NERVOUS
SYSTEM AND POTENTIALLY AT THE
LEVEL OF THE SPINAL CORD HAS TO
BE REGULATING THE REFLEX
PATHWAYS ACROSS ALL MUSCLES EVEN
IF THEY ARE QUOTE-UNQUOTE ON THE
SAME SIDE OF THE JOINT.
AND SO MATHEMATICALLY, YOU CAN
EXPRESS THIS AS THE FACT THAT 1
SINGLE VARIABLE, A JOINT ANGLE
DEFINES THE EXCURSIONS OF ALL
MUSCLES CROSSING THAT JOINT
WHICH IS VERY INTERESTINGLY THE
OPPOSITE OF WHAT WE THINK ABOUT
MUSCLE REDUNDANCY MUSCLE
REDUNDANCY WE THINK THAT TO
PRODUCE A NETJOINT ACROSS THE
JOINT WITH MANY MUSCLES CAN BE
DONE IN AN INFINITE NUMBER OF
WAYS TECHNICALLY WHICH IS TRUE
BUT ONCE YOU START TALKING ABOUT
MOVEMENT, THEN IN MOVEMENT WE
ARE THE FURTHEST FROM REDUN ANT.
ESSENTIALLY WE REQUIRE STRICT
COORDINATION IN THE REFLEX
PATHWAYS SO THEN WE NEED TO MOVE
AWAY FROM TRADITIONAL
PERSPECTIVES OF MUSCLE
REDUNDANCY TO UNDERSTAND THAT
OUR BODIES AND THE WAY THEY'RE
BEING CONTROLLED AND INTIMATELY
AFFECTED BY THE WAY MUSCLES HAVE
THEIR INNERVATION.
SO ANOTHER EXAMPLE, I WANT TO
PRESENT TO YOU IS THIS IDEA OF
CAN WE REALLY UNDERSTAND THE
MUSCLE VELOCITIES THAT MUSCLES
SEE BECAUSE IF WE UNDERSTAND
THAT THEN WE UNDERSTAND
ESSENTIALLY THE CONSTRAINTS
UNDER WHICH THESE REFLECT
PATHWAYS OR SPINAL CIRCUITRYS
NEED TO BE MODULATED, AND A VERY
SIMPLE EXAMPLE IS THAT OF THE
BASKETBALL FREE THROW, SO VAN
HAGUEN WHO IS NOW AN ENGINEER AT
SARCOS, HE'S VERY INTERESTED IN
BASKETBALL.
SO WHAT WE ASKED WAS, OKAY, WHAT
HAPPENS WHEN YOU MOVE YOUR ARM
TO BE ABLE TO THROW A
BASKETBALL, WELL IT TURNS OUT
YOU CAN CREATE A COMPUTATIONAL
MODEL WHICH IS IN THIS CASE, A
PLANAR MODEL OF AN ARM WITH ALL
THESE DIFFERENT 18 MUSCLES, THAT
CROSS THE SHOULDER, THE ELBOW
AND THE WRIST, ASK WHAT YOU WANT
TO DO HERE ON YOUR RIGHT IS
START THIS INITIAL POSITION,
MOVE YOUR ARM AND END AT THIS
FINAL POSITION WITH A PARTICULAR
VELOCITY, SO THAT THE BALL THEN
GOES IN AND SCORES, RIGHT?
AND ANOTHER WAY TO SEE THIS IS
THAT EACH OF THESE MOVEMENTS, IN
EXTERNAL SPACE, IS ACTUALLY
ACCOMPANIED AND PRODUCED BY
ROTATIONS OF SHOULDER, ELBOW AND
WRIST AND HERE YOU CAN SEE THE
PATH IN THIS ANGLE ROTATIONS OF
THESE 3 JOINTS THAT MUST BE
FOLLOWED TO PRODUCE EACH OF
THESE TRAJECTORIES.
SO WHAT THIS ALLOWS US TO DO IS
TO EXPLORE ESSENTIALLY THIS IDEA
OF KINEMATTIC REDUNDANCY WHERE
WE SEE THAT THERE ARE MANY WAYS
TO GET FROM A TO B, AND ALL OF
THOSE ACCOMPLISH THE TASK AND
PEOPLE TEND TO THINK OF THIS AS
REDUNDANCY BUT ALL OF THESE
TRAJECTORIES EQUIVALENT FROM THE
PERSPECTIVE OF THE MUSCLES IS
THE QUESTION.
SO AS AN EXAMPLE IN THIS PAPER
IN THE JOURNAL OF BIOMECHANICS
WE SHOW 3 TRAJECTORIES OF END
POINT OF THE ARM, THAT LOOK LIKE
SIMILAR AND OF COURSE THEY ALL
ACHIEVE THE GOAL OF SCORING BUT
WHEN YOU ACTUALLY LOOK AT THEM
IN DETAIL, AND THE ACTUAL
PATHWAYS IN JOINT SPACE, HOW
DOES THAT MOVEMENT GET PRODUCED
AT THE LEVEL OF THE MUSCLES.
WE SEE THAT AND HERE IS A
CONCEPTUAL GRAPH OF MUSCLE
VELOCITIES FOR ALL 100,000
MOVEMENTS SIMULATED BUT HERE ARE
MOVEMENTS 1, 2, AND 3.
AND WE SEE THAT THE CUMULATIVE
VELOCITIES THAT THEIR MUSCLES
SEEK CAN BE QUITE DIFFERENT.
WHICH THIS SUGGESTS THEN THAT
NOT EVERY MOVEMENT IS EQUIVALENT
TO EVERY OTHER MOVEMENT.
SO THEN IF YOU THINK OF HAVING
TO MOVE YOUR ARM IN A WAY THAT
IT INDUCES HIGH VELOCITIES AT
YOUR MUSCLES, PERHAPS THIS IS
WHERE SPAOF SP A CITIES AND
COORDINATED CROSS ALL MUSCLINGS
SO THEN THAT BEGINS TO TELL US
THAT PERHAPS MOVEMENT DISORDER
VS ANOTHER DIMENSION THAT WE
HAVE BEEN LOOKINGA THE VERY
CAREFULLY.
SO HERE IS THAT IN MORE DETAIL,
WHERE HERE YOU HAVE MOVEMENT 1
IN GREEN, AND THESE ARE THE
VELOCITIES THAT THOSE 18 MUSCLES
SEE AND THOSE INCREASE
DRAMATICALLY IN A PARTICULAR WAY
OVER TIME AND HERE WE CAN SEE
THAT EACH OF THESE MOVEMENTS HAS
A DIFFERENT TYPE OF SOLID
KINEMATTIC SIGNATURE AT THE
LEVEL OF THE MUSCLES, SO WHAT
THIS CAN DO IS EXPLAIN WHY FOR
EXAMPLE, SOME ATHLETES ARE QUITE
ADEPT AT SCORING BECAUSE MAYBE
THEY ARE USING THESE MOVEMENTS
THAT ARE USED LOWER VELOCITIES
WHEREAS MAYBE OTHER ATHLETES
PRODUCE GREATER ERRORS IN THEIR
SCORES FOR EXAMPLE, BECAUSE
MAYBE THEY'RE INDUCING HIGHER
VELOCITIES AND THEN THEY NEED TO
COORDINATE THEIR MUSCLES IN A
WAY THAT IS MORE SENSITIVE TO
ERRORS.
SO THIS CAN ALSO POTENTIALLY BE
APPLIED TO DISABILITIES.
SO HOW IS IT THAT IN SOME CASES,
SOME MOVEMENT DISRUPTIONS EMERGE
IN 1 CASE BUT NOT IN ANOTHER
WHEN REACHING TO THE RIGHT OR
REACHING TO THE LEFT, ET CETERA.
SO THE NEW KNOWLEDGE NUMBER 3
HERE IS REALLY ABOUT ASKING BUT
HOW SIMILAR EVERY DAY MOVEMENTS
CAN REQUIRE DIFFERENT TUNING OF
REFLEX MUSCLES ACROSS DIFFERENT
MULTIPLE MUSCLES AND JOINTS.
SO THERE ARE THE DETAILS OF THE
MOVEMENT CAN MATTER TO THE
EMERGENCE OF MOVEMENT DISORDERS,
EVEN IN EVERY DAY ACTIVITIES
WHERE THE MOVEMENTS LOOK
APPARENTLY SIMILAR.
SO AND THEN, THE -- THE LAST
EXAMPLE THAT I WILL SPEND A
LITTLE BIT MORE TIME ON HERE, IS
A MORE RECENT WORK WHERE WE TALK
ABOUT HOW CAN STRETCH REFLEXES
BE FINE TUNED IN MORE REALISTIC
LIMBS, THAT IS 3D MOVEMENTS,
LIMBS THAT HAVE MULTIPLE MUSCLES
AND THAT HAVE MANY MUSCLES AND
THEY'RE ALL BEING ACTIVATED BY
REFLEX PATHWAYS, ET CETERA
BECAUSE IN THE WORK UP UNTIL
NOW, I HADN'T SHOWN YOU WHAT
HAPPENS WHEN YOU CLOSE THE LOOP
IN THESE SIMULATED MOVEMENTS.
SO, THIS WAS RECENTLY PUBLISHED
LATE LAST YEAR AT THE
PROCEEDINGS FROM THE ACADEMY OF
NATIONAL SCIENCES WHERE WE TALK
ABOUT THESE ALPHA GAMMA MOTOR
NEURONS AND HOW THEY INTERACT
DURING REALISTIC MOVEMENTS AND
SO THIS IS WORK DONE WITH ANDREW
IRWIN, WITH WHOM WE PUBLISHED
THOSE OPINION PIECE IN NATURE
MACHINE INTELLIGENCE BUT ALSO
GRACE NIYO AND LAMA ALRNOFEEZ,
SO LET'S SET THE STAGE.
IF WE COULD SIMULATE A RECEASE
MACAQUE ARM, WHEN MOVING WITH
MANY MULTIARTICCULE MARKED FOR
IDENTIFICATIONS WHAT HAPPENS
WHEN YOU MOVE THE ARM?
SO THIS SHOWS CONCEPTUAL
DIFFERENCES, IMAGINE HAVE YOU AN
OPEN LOOP SIMMULES WHERE YOU
HAVE 25 SIGNALS FOR ALPHA MOTOR
NEURON DRIVE TO 25 MUSCLES, THAT
GO THE EXTRA MUSCLE WHICH ARE
ACTUALLY THE BULK OF THE MUSCLE,
SO AND THEN WE RECORD THE OPEN
LOOP TRAJECTORIES WHEN WE
PRODUCE THESE THESE BEHAVIORS
AND SO, AT THE LOW LEVEL, EACH
MUSCLE IS RECEIVING A RELATIVELY
RANDOM AMOUNT OF ACTIVATION.
SOME MUSCLES ARE ACTIVATED AT A
HIGHER LEVEL, SOME ARE ACTIVATED
AT A LOWER LEVEL AND WE DO THIS
100,000 TIMES SO FOR EACH
EXAMPLE WE PRODUCE HERE WE HERE
NOW HAVE THE SIMULATED RECESS
MONKEYED ARM, WE HAVE AN INITIAL
AND THEN THE FINAL SITUATION,
WHERE WE'RE ASKING THE SIMULATED
ARM TO START AT REST BY THE SIDE
OF THE MONKEY AND THEN WE
SIMULATE IT AND IT MOVES
SOMEWHERE IN 3 DIMENSIONAL
SPACE.
SO THIS IS SIMULATING A WIDE
VARIETY OF MOVEMENTS THROUGHOUT
THE WORK SPACE OF THE ARM.
AND WHAT WE DID HERE IS WE USED
THE WORK OF CHAN AND MORAM AND
THEY HAD SIMULATED MODEL WHICH
WE SIMULATED IN MUJOCO, WHICH
ALLOWS FOR THESE MUSCLE
ACTIVATIONS SO IT'S A GOOD
PHYSICS ENGINEER DEVELOPED.
SO EACH OF THESE 100,000
MOVEMENTS THAT WERE PRODUCING IN
AN OPEN LOOP FASHION, WHAT WE
THEN DID IS WE CLOSE THE LOOP
HERE WHERE THE SENSOR THEN
BECAME ACTIVE -- ESPECIALLY
BECAUSE MUSCLES DURING THESE
MOVEMENTS DON'T JUST SHORTEN
DURING THE MOVEMENT BUT RATHER
THEY COULD BE SHORTENING DURING
A PART-TIME OF THE MOVEMENT AND
LENGTHENING IN ANOTHER PART OF
MOVEMENT AND SHORT KNOWING AGAIN
SO IT IS QUITE A COMPLEMENTED
KINEMATTIC SITUATION WHEREBY YOU
MOVING YOUR ARM IN SPACE, IT'S
NOT THAT YOU HAVE THE CLEAN
SITUATION WHERE A MUSCLE WILL
ALWAYS BE SHORTENING OR ALWAYS
BE LENGTHENING.
SO WHAT WE DID WITH THE
SIMULATIONS THAT WE HAD WE
SIMPLY CLOSED THE MUSCLE
SPINDLE, WHERE AT ANY MOMENT
WHERE THE MUSCLE WAS BEING
LENGTHENED YOU HAD A POSITIVE
FEEDBACK ON TO ITS ALPHA MOTOR
NEURON, WHICH IS ESSENTIALLY THE
STRETCH REFLEX MECHANISM, SO IF
YOU WANT A PATHWAY, AND WE ASKED
THICISMEM ICISM -- THE SIMPLE QN
OF DID THE MOVEMENT STAY THE
SAME OR WAS IT DISRUPTED?
AND WHAT YOU CAN SEE HERE, THE
BLACK -- THE BLACK LINE IS
ACTUALLY THE LINE THAT SHOWS
WHAT HAPPENS WHEN THEIR IS NO
WHEN WELL IS NO REFLECT WHEREVER
A MUSCLE IS LENGTHENED YOU SEE
THAT THE TRAJECTORY CAN ACTUALLY
BE DISRUPTED IN SYSTEMATIC WAY
EXPTION QUITE CRAZY WAYS.
HERE I'M JUST SHOWING YOU A FEW
OPTIONS FROM THE 1100S THAT WE
WERE SIMULATED SO HERE YOU SEE
ANOTHER 1, WHERE IN BLACK, THE
MOVEMENT WITHOUT REFLEXES IS
SHOWN, AND THEN IN COLORS, GOING
TO RED YOU SEE HOW THE MOVEMENT
IS DISRUPTED AND SO IN SOME
CASES, YOU SEE THE END POINT
REMAINS THE SAME BUT THE
TRAJECTORY IS AFFECTED.
IN OTHER CASES THE END POINT IS
GOING IN THIS DIRECTION BUT THEN
AS YOU INCREASE THE DISRUPTS THE
MOVEMENT IT ENDS UP GOING AND
MOVING IN A DIFFERENT DIRECTION
ENTIRELY SO HERE'S ANOTHER
EXAMPLE WHERE YOU CAN SEE THIS
CHANGE NOT ONLY IN THE
TRAJECTORY AS THE MOVEMENT
EVOLVES BUT ALSO CHANGES IN THE
END POINT LOCATION AND HERE YOU
SEE ANOTHER VERY CRAZY SITUATION
WHERE THERE IS WHEN THE -- WHEN
THERE ARE NO STRETCH REFLEXES IN
BLACK BUT THEN AS SOON AS YOU
TURN ON THE STRETCH REFLEXES,
THE MOVEMENT ENDS UP GOING
ELSEWHERE.
SO SO THIS IS THE FIRST TIME
THAT WE SAW CONSEQUENCES OF
MUSCLES AND SENSORS.
SO THIS CAN TELL US ABOUT HOW
CHANGES IN MOOD, ANXIETY, ET
CETERA IN A PATIENT WITH A GIVEN
CONDITION WITH A PROPENSITY TO
STAY PLASTICITY CAN AFFECT THE
MOVEMENTS POTENTIALLY THROUGH
MECHANISMS IN THE BRAIN STEM OR
CEREBELLUM OR MIDBRAIN THAT
CHANGE THE GAINS OF THESE
REFLECTS WHICH ARE KNOWN TO
CHANGE WITH MOOD AND STRESS AND
ANXIETY AND THINGS LOAMACYIC
THAT.
SO THE NEXT QUESTION WE ASKED
WAS WELL, HOW DOES NATURE SOLVE
THIS DIFFICULT PROBLEM BECAUSE
NATURE OF COURSE, ALWAYS HAS
THESE REFLEX PATHWAYS ACTIVE AND
THEY'RE NOT ALWAYS ELIMINATED OR
TURNED OFF FOR EVERY MOVEMENT
THAT WE DO.
SO, HERE ARE 2 THEORIES THAT ARE
AVAILABLE TO US, AND THIS IS
THANKS TO THE REVIEW THAT
PIERROT-DESEILLIGNY AND BURKE
HAVE DONE.
ONE OF THEM IS WHAT HAPPENED
WITH WHAT ARE CALL BETA
MOTONEURONS, MOSTLY IN
AMPHIBIANS, REPTILES AND
MAMMALS, HAVE THEM, DO NOT
DOGMAS NOT HAVE GAMMA
MOTONEURONS, YOU SEE THAT THE
DRIVE FROM THE MOTONEURON ITSELF
GOES TO THE MUSCLE BUT IT ALSO
GOES TO THE MUSCLE SPINDLES AND
SO, THAT COMES BACK AND THE
REFLEX PATHWAYS CLOSE THIS WAY.
SO IN THIS PARTICULAR CASE, BOTH
THE MUSCLES SPINDLE TUNING AND
THE MUSCLE AS A WHOLE RECEIVE S.
AS EVOLUTION PROGRESSED THERE
WAS THIS WHERE YOU NOW HAVE AN
ALPHA AND A GAMMA MOTOR NEURON,
AND SO WHAT IS OCCURRING IS WHAT
WE'RE THINKING TODAY IS THAT
THERE IS SO CALLED ALPHA GAMMA
WHERE THE DEMAND ISSUES
ACTIVATION TO THE WHICH THEN
TUNES THE SENSITIVITY OF THE
STRETCH REFLEX, SO WHAT WE
TESTED WAS, WHETHER OR NOT,
RECAPITULATION OF -- AND THE
WOULD NOT BE HAPPENING.
NOW, THIS OF COURSE, IS MUSIC TO
OUR EARS FOR THOSE OF US WHO
STUDY COMPUTATIONAL MOTOR
CONTROL WHERE WE KNOW OKAY THERE
ARE MULTIPLE THEORIES ABOUT
INTERNAL MODELS OR THEORIES
ABOUT OPTIMIZATION OF CONTROL,
THERE ARE MANY THEORIES OF BASE
AND CONTROL, OR EVEN SYNERGISTIC
CONTROL OF MOVEMENT BUT AT LEAST
THIS ALLOWS US TO BRING THOSE
THEORIES TO THE DOMAIN OF A
LENGTH, WIDTH MUSCLE SENSORS BUT
THERE ARE OF COURSE CERTAIN
PROBLEMS, BECAUSE IN THE CURRENT
THINKING OF ALPHA GAMMA CO
ACTIVATION.
THAT ENDS UP BEING DUPLICATED
COPIES, EMULATED WELL BALANCED
BETWEEN THE ALPHA AND THE GAMMA
BUT EXACTLY HOW THAT HAPPENS IS
NOT WELL KNOWN.
SO, THERE ARE SEVERAL PROBLEMS
WITH THIS, IN THAT, THE GAMMA
MOTOR NEURONS RECEIVE INPUT,
THAT ACTUALLY ARE COMING FROM
DIFFERENT PARTS OF THE BRAIN
POETIC PENTINE REGIMENNIALLY
FROM N1, FROM CEREBELL UMPIRES,
FROM RETICULAR FORMATION, BRAIN
STEM, 1 IS SENDING COMMANDS
THROUGH THE ALPHA MOTOR NEURONS
THROUGH THE INTERNEARONS IN THE
SPINAL CORD, SO THERE ARE THE
ISSUES OF DELAYS AND UNCERTAINTY
OF HOW TO SEND AN EXACT COPY OF
THE SAME COMMAND THROUGH
POTENTIALLY DIFFERENT PATHWAYS
TO ARRIVE AT THE SAME TIME TO
THE SYSTEM NEURONS, TO
ACCOMPLISH THIS PARTICULAR
MODULATION.
SO EVEN THOUGH WE HAVE GOOD
CONTROL AND FIBERS AND ALL THAT
VERY INTERESTING DEVELOPMENT IN
COMPUTATIONAL NEUROSCIENCE, IN
SCIENCE IT IS DIFFICULT TO KNOW
HOW THEY COULD BE HAPPENING.
SO ACTIVATION IN PRINCIPLE WE
KNOW IT WORKS AND IDEALLY IT
COULD WORK, BUY-IN IT IS NOT
CLEAR HOW IT WOULD WORK.
SO THINKING ABOUT THIS AND YOU
MAY KNOW THERE IS THIS CELL, AND
THIS IS AN ILLUSTRATION FROM
1962 WHY WILSON AND BURGESS
WHERE THEY FOUND THAT AN ALPHA
MOTOR NEURON SENDS STIMULUS TO A
MUSCLE BUT HAS WHAT ARE CALLED
COLLATERALS, MEANING THAT THE
AXON FROM THE MOTOR NEURON ON
ITS WAY HAS THESE
OPTIONS AND IT'S MOST FAMOUS FOR
THE CELL THAT WAS ALSO KNOWN TO
COME BACK TO INHIBIT THE ALPHA
MOTOR NEURONS, SO PRESUMABLY TO
STABILIZE FIRING RATES TO
MODULATE PERSISTENCE IN
OCCURRENCE AND THAT AND THERE'S
A WHOLE COMMUNITY THAT
INVESTIGATES THAT.
BUT, IN THEIR PAPERS WILSON AND
BURGESS AND MANY ARES, THEY ALSO
SAY THAT THE COLLATERALS NOT
ONLY WENT BACK TO THE ORIGINAL
NEURON BUT THEY SEEM TO HAVE
PROJECTED INTO OTHER NEURONS,
OTHER MOTE OR NEURONS THAT WERE
IN THE VICINITY OF THE SPINAL
CORD.
SO LOOKING AT THIS IDEA,NY O AND
I THOUGHT, WELL, IF WE KNOW THAT
THERE ARE COLLATERALS, WHAT IF
THESE COLLATERALS IMPINGED OR
PROJECTED OR MODULATED THE
ACTIVATION OF THEIR SISTER,
GAMMA MOTOR NEURON, SO THIS CAN
BE DONE THROUGH A SYNAPTIC STEP
AND INHIBITORY NEURON AND GOING
ON TO THE GAMMA DYNAMIC OR IT
COULD BE POTENTIALLY A MOTOR
SYNAPTIC STEP THAT COULD BE A
POSSIBILITY AND THIS IS BECAUSE
VERY RECENT ADVANCES IN GENO
TYPING OF MOTOR NEURANS AND
BEING ABLE TO ACTUALLY
UNDERSTAND THE POPULATIONS OF
NEURONS IN THE SPINAL CORD BUT
ALSO CATEGORIZE THEM AS TO THEIR
FUNCTION AND SIZE, ET CETERA.
MAY ALLOW US TO HAVE THIS
PROJECTION, SO THIS IS
UNBELIEVABLE PROJECTION THAT WAS
REPORTED ALREADY IN THE 60S,
BEING BEING CONFIRMED,
ESSENTIALLYOT DAILY BASIS
NOWADAYS, IF YOU GO TO MEETINGS
ON MOTOR NEURONS.
SO WHAT WE DID INLET SIMULATIONS
HERE IS WE SIMPLY LOOKEDDA THE
CONCEPT OF THERE BEING SUCH
COLLATERAL GOING FROM THE ALPHA
MOTE OAR MIEWRON TO THE
SIMULATED GAMMA MOTONEURON THAT
MODULATES THE ACTIVITY HERE OF
THAT GAMMA MOTONEURON AND IT
MODULATES THE STRETCH REFLEX
HERE AND WHAT WE FIND HERE IS
THAT IT HAS A VERY SIMILAR, NOT
IDENTICAL, BUT VERY SIMILAR
EFFECT TO THAT DATA OR ALPHA
GAMMA ACTIVATION STRUCTURE THAT
I DISCUSSED BEFORE.
SO, WHAT THIS SUGGESTS IS THAT
PERHAPS, THE MODULATION OF
STRETCH REFLEXES, IS HAPPENING
NOT AT THE LEVEL OF CORTEX, NOT
AT THE LEVEL OF BRAIN, NOT AT
THE LEVEL OF CEREBELLUM, BUT
PERHAPS ALREADY AT THE LEVEL OF
SPINAL CORD AND HERE WE SEE
EXAMPLES OF HOW THESE ERRORS IN
THE TRAJECTORIES ESSENTIALLY
VANISH IN MOST CASES, NOT ALL,
BUT IN MOST CASES, WHEN YOU
IMPLEMENT SUCH COLLATERAL TO THE
GAMMA MOTONEURON.
AND SO WHAT YOU SEE HERE IS THAT
WHAT THIS PRODUCES IS OF COURSE
A DISRUPTION BECAUSE WE WOULDN'T
EXPECT THERE WOULD BE PERFECT
OBLITERATION OF ARE THAT REFLEX
PATHWAY BUT IT DOES MODULATE IT
AND IF IT DOES MODULATE IT AND
TUNE IT DOWN, WHAT HAVE YOU IS A
BEHAVIOR THAT IS CLOSE TO THE
OPEN LOOP BEHAVIOR BUT THEY ARE
SMALL AND USEFUL BUT THIS IS
VERY CRITICAL BECAUSE ALL MODELS
OF CEREBELLAR ERROR DETECTION
AND MODULATION AND THE ROLE OF
CLIMBING FIBERS GOING FROM
DORSAL GANGLION TO THE
CEREBELLUM, ET CETERA, THEY
REQUIRE THE TUNING OF THE
CEREBELLUM WITH TRAINING, WITH
EXPERIENCE, BUT BY HAVING THIS
QUOTE-UNQUOTE ERROR BEING
MANAGEABLE AND INFORMAIVE IT,
THIS MAY BE A CRITICAL
CONTRIBUTOR TO THE THEN
EMERGENCE AND TRAINING OF THE
CEREBELLUM.
SO HERE WE SEE THAT THIS
POTENTIALLY ANGIENT MECHANISM,
WHICH IS -- ANCIENT MECHANISM
WHICH IS POTENTIALLY EMBEDDED IN
THE SPINAL CORD THAT ALLOWS AN
ALPHA MOTE OR MIEWRON TO
INTERACT WITH ITS SISTER GAMMA
MOTOR NEURON FOR THE SAME
MUSCLE, TO PRODUCE USEFUL
BEHAVIOR AND THEN, BY ANALOGY,
IMAGINE THAT YOU HAVE A
TRICYCLE.
A TRICYCLE IS VERY TABLE,
EPITILES, MAMMALS, HAD THIS TYPE
OF CIRCUITRY, TO HAVE SENSORS IN
MUSCLES WHICH ARE NECESSARY, BUT
ALSO MANAGE THE EFFECTS OF
HAVING THE SENSORS AND THE
CLOSED LOOP REFLEX.
>> YOU HAVE 5 MORE MINUTES TO
BRING IT ON HOME, OKAY?
>> THANK YOU THIS IS PRETTY MUCH
MY LAST SLIDE.
THANK YOU.
HERE, YOU HAVE THE ALPHA MOTOR
NEURON COLLATERAL WHICH IMAGINE
THAT YOU WANT TO GET TO THE
POINT OF A FULL ON BICYCLE,
WELL, WHAT IF YOU HAD TRAINING
WHEELS?
NOW OF COURSE WHEN A CHILD IS
LEARNING TO RIDE A BICYCLE
HAVING LEARNED HOW TO WORK ON A
TRICYCLE, THE TRAINING WHEELS
ALLOW YOU TO MAKE ERRORS, BUT
THESE ERRORS ARE MANAGEABLE.
AND SO, PERHAPS IN YOUNG MAMMALS
OR AS EVOLUTION STARTED TO
COMPLICATE THE NEUROMUSCULAR
SYSTEMS OF MAMMALS, THEN IT
ALLOWS US TO HAVE THESE
MANAGEABLE ERRORS THAT ALLOW US
TO WRITE HISTORY IN THE SENSE OF
WE NOW HAVE THE FABULOUS
CEREBELLAR MECHANISMS
PREDICTIONS AT THE LEVEL OF
CORTEX, ET CETERA, BUT ALL
ENABLED BY THIS MECHANISM.
AND WHAT IS INTERESTING ABOUT
THIS IS THAT THIS AND NOW THIS
TYPE OF ANCIENT MECHANISM IS
WHAT WE ARE COLLABORATING WITH
MULTIPLE PEOPLE AROUND THE WORLD
WHO ARE ABLE TO RECORD FROM
THESE COLLATERALS AND THESE MORE
GAMMA MOTONEURONS THAT ARE FAME
LOWSLY DIFFICULT TO DETECT AND
MEASURE FROM.
NOW PERHAPS WE CAN NOW GIVE
DIRECTION TO A LOT OF THE GENE
THERAPIES THAT COULD BE
HAPPENING TO ENABLE CHANGES AT
THE LEVEL OF THE SPINAL CORD TO
POTENTIALLY NOW COME BACK TO THE
CLINIC AND SAY, PERHAPS, THIS
COULD BE A WAY TO MITIGATE OR
MODERATE SPAOF THEISITY IN
SEVERAL THINGS LIKE PARKINSONS
DISEASE, MS, AND OTHERS, AND SO
THAT IS JUST COMPUTATION MODELS
TO UNDERSTAND HOW SENSORS IN
MUSCLES, HOW SENSORS IN MUSCLES
ARE TREMENDOUSLY IMPORTANT BUT
OFTEN OVERLOOKED AND THIS WE
HOPE WILL ENABLE US TO HAVE A
BETTER UNDERSTANDING OF THE
EMERGENCE OF MOVEMENT DISORDER
AND THEIR TREATMENT.
AND OF COURSE OW LAB HAS DONE
TREMENDOUS WORK IN THIS REGARD
AND THIS WOULD NOT HAVE BEEN
POSSIBLE AT OWL WITHOUT THE
NATIONAL INSTITUTES OF HEALTH,
THE DARPA, WHO HAVE SUPPORTED
THIS FUNDAMENTAL RESEARCH IN
COMPUTATIONAL NEUROMUSCULAR
CONTROL.
SO WITH THAT I THANK YOU AND
PLEASE LET ME KNOW IF THERE ARE
ANY QUESTIONS.
>> THANK YOU FRANCISCO.
WE WILL OPEN IT UP TO QUESTIONS.
NI SEE DR. SIBURG BERG HAS
QUESTIONS, DO I NEED TO STOP
SHARING OR GO TO ANOTHER SLIDE?
HELLO BOB.
>> GO AHEAD, BOB.
>> SORRY ABOUT THAT, YEAH,
FRANCISCO, FIRST, THANK YOU SO
MUCH.
EXCELLENT PRESENTATION, UNABLE.
ELEGANT SEQUENCE, LOGIC FOR YOUR
SIMULATIONS AND YOUR STUDIES.
I HAVE 2 QUESTIONS THAT ARE
PROBABLY EXTREMELY NAIVE.
AND 1 IS WITH RESPECT TO SIM
IEWMGZS YOU SHOWED IN THE LATTER
HALF WITH THE TRANSLATIONAL
RESEARCH YECTRYS OVERLAID, SO
YOU HAD OPEN LOOPED SIMULATION,
AND THEN YOU ASKED THE QUESTION,
IF WE ADD REFLEXES, WITH VARIOUS
YOU KNOW -- VARIOUS,
CHARACTERISTICS,.
>> REFLEX GAINS, YES.
>> YEAH, YEAH.
YOU KNOW WHAT WILL HAPPEN?
AND MY QUESTION THERE IS I SHORT
OF GET IT, AND I SORT OF DON'T
GET IT.
SO YOUR OPEN LOOP SIMULATION IS
ASSUMING THAT YOU KNOW IF WE
WERE TO PRETEND THIS WAS A
NERVOUS SYSTEM THAT YOU HAD
PORTIONAL CONTROL OF MEDICALS
FROM DESCENDING COMMANDS AND
THEN YOU SAY LET'S THROW THE
REFLEXES ON THERE ANDEE WHAT
HAPPENS, I'M ASSUMING THAT WHEN
YOU ARE DOING THAT, YOU ARE
USING THE SAME PROPORTIONAL
CONTROL OF MUSCLES TO DRIVE THE
MOVEMENT AND THE REFLEXES ARE ON
TOP OF THAT.
VERSUS, WHAT I THINK OF MORE
PROBABILITY OF THE NATURAL
PHYSIOLOGICAL SYSTEM OF TAKING
ADVANTAGE OF REFLEXES WHEN
GENERATING, YOU KNOW PRIOR TO
GENERATING LIKE A COMMON FILTER
TYPE APPROACH.
SO I'M KIND OF WONDERING HOW YOU
PUT THOSE 2 THINGS TOGETHER OR
IF I'M TOTALLY MISINTERPRETING
IT.
>> NO, NO, NO THIS, IS A VERY
GOOD QUESTION BECAUSE YOU ARE
FOLLOWING THE LOGIC OF A SYSTEM
THAT IS BUILT UP ALREADY IN THAT
WAY AND IT NEEDS TO ACCOUNT FOR
THE REFLEXES.
NOW, OUR APPROACH IS THAT EVEN A
LITTLE MORE NAIVE THAT THAN THAT
WHERE WE SAY, EVEN TO MY
KNOWLEDGE, EVERY 3 DIMENSIONAL
SIMULATION THAT I'VE SEEN OF
BEHAVIOR, IS OPEN LOOP OR
ASSUMES THAT THERE THE REFLEX
PATHWAYS THAT BEEN TAKEN CARE
OF.
MY OWN WORK, THE WORK OF
PRACTICALLY ALL MODELERS, IS
SOMEHOW THE MOTOR COMMAND IS
APPROPRIATE TO PERFORM THE
BEHAVIOR.
NOW, WHEN WE ASK DID YOU
CONSIDER REFLEXES, WE SAY, NO,
WE DIDN'T BECAUSE WE'RE ASSUMING
THAT THERE WERE ALREADY TAKEN
CARE OF AT SOME POINT.
SO OUR QUESTION WAS ACTUALLY
VERY, VERY NAIVE, IT WAS IF YOU
HAVE A DESCENDING COMMAND, WILL
THE MOVEMENT BE DISRUPTED IF THE
REFLEX PATHWAY EXISTS, SO THE
INITIAL STEP OF -- HOW MUCH --
NYEAH, I WILL INTERRUPT YOU A
SECOND.
I GUESS I'M -- I THINK WE'RE
MISSING EACH OTHER HERE.
YEAH, I GET THAT.
BUT TO GENERATE THAT INITIAL,
THE OPEN LOOP TRAJECTORY, YOU
HAD TO HAVE IN KIND OF --
>> IT WAS OPEN.
>> THAT'S FINE COMPLETELY OPEN
LOOP WHAT I'M REALLY ASKING, FOR
GET ABOUT THE COMMENT UP THERE,
IS IF OUR CONTROL SYSTEM
ACCOUNTED FOR THE REFLEXES IN
SETTING UP AND SENDING THE
COMMANDS, RIGHT IN AND THEN
THOSE COMMANDS WOULD BE
DIFFERENT.
SO I GUESS NOW I'M ANSWERING MY
OWN QUESTION, SO THE DIFFERENCE
IN THE TRANSLATIONAL RESEARCH
YECTRYS IS THE DIFFERENCE
BETWEEN WHAT TYPE OF COMMANDS
WOULD HAVE TO BE GENERATED
ACCOUNTING FOR REFLEXES OR NOT.
>> YES.
>> THE SECOND QUESTION I HAVE IS
I SAW THAT YOU KEPT LABELING THE
GAMMA ACTIVATION AS DYNAMIC AND
YOU KNOW THAT REMINDS ME OF
COURSE OF ELEGANT WORK AND
BECAUSE YOU COULD SET UP WITH
THE REFLEX A DASH POT OR A
SPRING WHETHER YOU PLAYED WITH
THE RATIO OF STATIC AND DYNAMIC
WHEN YOU WERE DOING THE
SIMULATIONS AND 1 MORE LIKE
EXTENSION OF THAT IF YOU DON'T
MIND IS, THERE ARE TIMES IN THE
MOVEMENT WHEN THE ACCELERATIONS
OF THE SEGMENTS ARE COMPLETELY
DRIVEN BY EXTERNAL FORCES AND OR
INTERNAL INERTIAL FORCES WHERE
YOU DON'T EVEN HAVE DESCENDING
COMMANDS TO MODULATE REFLEX.
WONDERING ABOUT THESE 2 THINGS,
HAVE YOU THOUGHT ABOUT BOTH OF
THEM?
>> SO YEAH, THAT'S WHY WE USE A
BONA FIDE PHYSICS ENGINEER THAT
INCLUDES ALL OF THE INTERACTION,
ALL THE INITIAL FORCES THAT
WOULD RESULT FROM THE COMMANDS
AND BUT TO YOUR POINT ABOUT THE
SECONDARY INTERFERENCE, WE DID
NOT INCLUDE THE LENGTH IN THIS
POINT BECAUSE WHILE THEY'RE
THERE, WHEN PEOPLE INVOKE
REFLEXES, THEY ARE MOSTLY
PROBLEMATIC AT THE VELOCITIES,
BECAUSE AS A FIRST STEP WE ONLY
LOOK AT THE 1-A AAFER ENSEL.
YEAH.
SO YEAH, THIS GENERATES -- MORE
QUESTIONS THAN ANSWERS BUT AT
LEAST SETS US UP IN THE WAY THAT
WE CAN BEGIN TO UNDERSTAND MOTOR
CONTROL.
THANK YOU.
>> EXCELLENT.
>> YEAH, WE HAD 3 GREAT TALKS
TODAY, WE HAVE TO SHIFT GEARS A
BIT AND HEAD INTO THE FINAL
COUPLE.
I'M GOING TO E-MAIL YOU A COUPLE
OF QUESTIONS THAT I HAVE, BUT I
JUST WANT TO KEEP US ON TIME SO
YOU CAN --
>> OH, OKAY, THANK YOU.
>> SO YOU CAN CHECK YOUR E-MAIL
NSO AT THIS STAGE, WE WILL SHIFT
TO WITH THE MAY MEETING 1 OF THE
UNFORTUNATE PART SYSTEM WE HAVE
SOME PEOPLE ENDING THEIR TERMS
IN THIS CASE WOE ACTUALLY HAVE 6
MEMBERS WHO ARE ENDING THEIR
TERMS JUST BECAUSE OF THE WAY
THE TERMS ARE STAGGERED SO WE
WANTED TO GIVE EACH OF THEM A
CHANCE FOR A SAYING SOME FINAL
REMARKS ABOUT THEIR 4 YEARS ON
THE BOARD, WE VERY MUCH -- WE'VE
HAD GREAT DISCUSSIONS WITH THESE
FOLKS I WANTED TO GIVE THEM EACH
A CHANCE TO GIVE PARTING REMARKS
SO I WILL GO THROUGH AND ORDER
ALPHABETICAL BY FIRST NAME, WE
WILL GO FROM BARBARA TO DON TO
FRANCISCO TO JOSE, TO MICHELLE,
AND ROBERT.
SO BARBARA GO AHEAD.
>> WELL, OKAY, WELL THERESA AND
RALPH, I WANT TO THANK YOU FOR
ALL THAT YOU DO.
I HAVE ABSOLUTELY LOVED THE
INTERDISCIPLINARY DIALOGUES THAT
THESE MEETING HAVE HAD AND AS
YOU KNOW THE CONVERSATIONS
CONTINUE.
AND I ALSO WANT TO THANK YOU FOR
MAKING THE CHAIR ROLE SO EASY
FOR ME AND I WILL ASK YOU AND
THERESA, WHAT CAN WE DO FOR YOU
MOVING FORWARD?
BECAUSE WE'RE HERE FOR YOU EVERY
DAY.
>> I APPRECIATE THAT.
I APPRECIATE THAT.
WE WILL COME BACK TO WHEN WE
COME TO THE TOPIC OF THE NEXT
MEETING.
SO DAWN, YOU'RE UP NEXT.
YOUR COMMENTS TO YOUR FRIENDS
AND COLLEAGUES.
>> LIKE BARBARA I ENJOYED BEING
ON THIS MEETING, IT STARTED
DEARING COVID BUT IT'S ENDING
DURAN A STRANGE TIME AS LI
APPRECIATED YOUR LEADERSHIP
THERESA AND RALPH AND GETTING TO
KNOW PEOPLE I DON'T NECESSARILY
INTERACT WITH IN THE REHAB
COMMUNITY AND I WANT TO POINT
OUT A COUPLE VALUES THAT I'VE
SEEN YOU ALL EXHIBIT AND THE
GROUP AS WELL AS THE LEADERSHIP
AND NCMRR, AND THAT'S REALLY THE
VALUE OF OUR EARLY CAREER AND
TRAINEES, IT'S WONDERFUL TO SEE
SUCH FOCUS ON THAT, THAT IS SO
CRITICAL, AND ALSO THE VALUE OF
HAVING MORE PEOPLE ON THE BOARD
WITH LIVED EXPERIENCE, I FEEL --
IT SEEMS LIKE THAT'S INCREASED
AT LEAST IN MY TIME AND VALUING
THAT DIVERSE VOICE AS A
DIFFERENT PEOPLE WITH
DISABILITIES AND REHAB
POPULATIONS, SO, I'M GOING TO
MISS THESE MEETINGS AND PLEASE
ALSO, I'M WILLING TO HELP IN
WHATEVER WAYS I CAN.
>> MUCH APPRECIATED, DAWN.
AND NOW LET'S SHIFT TO
FRANCISCO.
>> A LITTLE BIT LIKE A STUDY
SECTION, I WILL NOT REPEAT THE
AMAZING COMMENTS ALREADY MADE.
I THINK WHAT I WOULD LIKE TO ADD
MERE TO THE DISCUSSION IS WE
NEED TO REMEMBER THAT WHEN WE
STARTED, WE WERE COMING OUT OF
COVID.
IT WAS ALL -- IT WAS ALL REMOTE,
THE SKY WAS FALLING AND THE
SERVICE THAT YOU DID BY BRINGING
US TOGETHER, BY KEEPING US
TOGETHER, BY HELPING US WORK
THROUGH THAT CRISIS, I WILL BE
ETERNALLY THANKFUL.
THANK YOU FOR YOUR DETERMINATION
BECAUSE IT'S EASY TO FORGET THAT
NIGHTMARE, RIGHT?
AND SO I HAVE SO MUCH RESPECT
AND ADMIRATION FOR THE WORK THAT
YOU DO AND SO THANK YOU FOR
THAT.
IT IS NOT EVER FORGOTTEN OR
TAKEN FOR GRANTED.
>> APPRECIATE IT.
THANK YOU.
JOSE, ARE YOU --
>> THANK YOU.
THANK YOU.
RALPH AND THERESA, HAS BEEN
REALLY AN HONOR AND PRIVILEGE TO
WORK WITH YOU, AND REALLY
APPRECIATE THE LEADERSHIP, THE
EFFORT, THE TIME YOU PUT INTO
THIS MEETINGS AND YOU KNOW
RUNNING THE CENTER, I HAVE BEEN
PRIVILEGED TO REPRESENT THIS
GROUP AT THE NATIONAL ADVISORY
COUNCIL AND I HAVE LEARNED SO
MUCH BEING AN ENGINEER I REALLY
CAN -- 360-DEGREES AROUND AND
WHAT YOU DO IN TERMS OF TRAINING
AND SUPPORTING AND SCIENTIFIC
ENTERPRISE AND THERE'S REALLY
I'M HERE, YOU KNOW I WOULD
REALLY LIKE TO STAY CONNECTED
AND KEEP WORKING, YOU KNOW.
WE HAD A LOT OF WORK TO DO, NOT
ONLY IN ADVANCING EDUCATION,
TRAINING BUT YOU KNOW STANDARD,
STEM, SCIENCE, AND YOU KNOW
BRINGING THIS TO THE PUBLIC SO
THAT THEY WILL KNOW WHAT WAS THE
IMPACT OF THIS AND REALLY
APPRECIATE THE EFFORT AND
WORKING WITH ALL MY COLLEAGUES
HERE.
THANK YOU SO MUCH.
>> MICHELLE?
>> HI, EVERYONE.
I FEEL LIKE I'M GOING AWAY ON A
LONG JOURNEY.
[LAUGHTER]
IT'S BEEN A PLEASURE TO SERVE.
I THANK YOU RALPH FOR PUTTING
THE BUG IN MY EAR WHEN I WAS
COMING OFF OF THAT STUDY SECTION
AND THANK YOU THERESA FOR YOU
KNOW WELCOMING ME AND THANK YOU
EVERYONE THAT I'VE SERVED WITH
FOR WELCOMING ME TO THE MEETING
AND FOR ALLOWING ME TO PUT MY
TWO-CENTS IN HERE AND THERE AND
I REALLY ENJOYED JUST THE
DIALOGUE, THE DISCUSSION, THE
INFORMATION ABOUT HOW NICHD
WORKS, HOW NCMRR WORKS HOW NIH
WORKS, IT WAS JUST REALLY
EDUCATIONAL TO SEE HOW KIND OF
THE PASSION THAT GOES INTO
MAKING SURE THAT WE HAVE
REHABILITATION SCIENCE IS KIND
OF HEARD, REHABILITATION SCIENCE
IS CERTAINTIED, AND THAT HOW WE
THEN BUILD THE NEXT GENERATION
OF REHABILITATION SCIENTISTS,
AND HOW, ACTUALLY ALSO
APPRECIATE HOW YOU GUYS CARE
ABOUT ENGINEERS, AND MAKING SURE
THAT ENGINEERS THAT ARE REALLY
PASSIONATE ABOUT REHAB, ARE A
PART OF THIS EQUATION.
SO I REALLY AM JUST THANK YOU.
I REALLY CAN'T FULLY SUM UP ALL
THE VALUE I'VE OBTAINED FROM
BEING A PART OF THIS MEETING AND
WILL MISS THESE MEETINGS AND SO
HAVE A LITTLE BIT OF TEAR COMING
DOWN BUT IT'S BEEN GREAT.
>> OH, OKAY, AND BOB?
BOB SAINBURG?
>> YEAH, WELL, ESPECIALLY IN
EMERGING ITS OF THANKS TO
THERESA AND RALPH, I WOULD SAY
THAT COMING FROM SOMEBODY WHO
HAS TROUBLE BEING QUIET AND
SITTING STILL, THE FACT THAT I
LOOKED FORWARD TO THESE
MEETINGS, ESPECIALLY THE
IN-PERSON 1 SYSTEM AMAZING AND
IT'S BECAUSE THE VALUE THAT THIS
GROUP PROVIDED TO ME, WAS
AMAZING.
OFTEN THOUGH I GUESS WE'RE ALL
SITTING IN OUR LITTLE CORNERS OF
SCIENCE AND REHAB SCIENCE THIS,
GROUP PULLED TOGETHER YOU KNOW
AN AMAZINGLY BROAD APPROACH, SET
OF APPROACHES TO DOING REHAB
SCIENCE AND I LEARNED SO MUCH
FROM INTERACTING BOTH IN THE
SUBCOMMITTEES AND THE GENERAL
COMMITTEE WITH EVERYBODY AND IT
REALLY EXPANDED BY SCOPE OF HOW
I VIEW THIS ENTERPRISE THAT YOU
GUYS MANAGE AT THE NIH LEVEL AND
APPRECIATE IT.
THANK YOU VERY MUCH.
NTHANKS.
WE WILL BE SENDING CERTIFICATES
OUT TO ALL OF YOU, SERIOUSLY
THAT YOU CAN PUT ON YOUR WALL.
AND I THINK IF YOUR ENGAGEMENT
IS THE REASON I TAKE BACK, THE
FACT THAT YOU FOLK REALLY DO
ENGAGE MAKES US FEEL GOOD THAT
WE USE THE ADVISORY BOARD AS
BEST WE CAN, WE ALWAYS TRY TO
SAY IT'S LIKE A 2 WAY STREET,
IT'S NOT ONLY WHAT YOU BRING TO
THE BOARD BUT IT'S YOU FOLKS
THAT ARE WELL CONNECKED AND YOU
CARRY THE STORY, THE MENTORSHIP,
YOU CARRY THE APPRECIATION OF
WHAT THE NIH IS DOING BACK TO
YOUR OWN RESPECTIVE COMMUNITIES.
AND NOW MORE THAN EVER WE NEED
THAT APPRECIATION OF THE ROLE OF
RESEARCH AND THE ROLE OF
ACADEMIC COMMUNITY IN OUR BROAD
CONSTITUENCIES, YOU HAVE TO
CARRY THAT NOW MORE THAN EVER.
SO FINALLY, I WANT TO IT'S ALSO
THE TIME SINCE BARBARA HAS BEEN
OUR CHAIR FOR A WHILE, I WILL
LET BARBARA TURN THE GAVEL OVER
TO KATHLEEN.
SO BARBARA I WILL LET YOU COME
BACK ON AND TURNOVER TO KATHLEEN
SO SHE CAN ASK FOR COMMENTS FOR
THE NEXT MEETING.
>> THANKS SO MUCH.
APPRECIATE EVERYTHING.
AND I WILL TURN THE VIRTUAL
GAVEL OVER TO KATHLEEN.
>> THANKS BARBARA, APPRECIATE
THAT.
I'M EXCITED TO BE ABLE TO HAVE
THIS ROLE AND I FEEL LIKE I
LEARNED A LOT FROM TODAY'S
MEETING.
I LOVE THE BREDTH OF INFORMATION
THAT WAS SHARED, I THOUGHT IT
WAS FANTASTIC WE WENT FROM
UNDERSTANDING CAREER TRANSITIONS
AND HOW A PERSON HAS MOVED THEIR
CAREER IN SO MANY WAYS TO
UNDERSTANDING MOTOR NEURONS AND
GOING BACK TO ALPHA MOTONEURONS
SO I AM REALLY EXCITED TO HAVE
THIS OPPORTUNITY.
SO THANKS AGAIN, AND THANK YOU
BARBARA, I AM SURE WE WILL HAVE
QUESTIONS FOR YOU AS WE MOVE
FORWARD.
AND I THINK ME ROLE NOW IS TO
ASK YOU ALL FOR A TOPIC
SUGGESTIONS FOR THE NEXT
MEETING.
SO I WONDER IF BEFORE WE LEAVE,
IF YOU COULD OFFER ANY
SUGGESTIONS TO US.
CHRIS, YEAH?
>> SO THANKS A LOT, I FEEL LIKE
1 OF THE FIRST MEETING I WENT TO
THAT THE CENTER FOR SCIENTIFIC
REVIEW CAME AND I'M WONDERING
NOW WITH THE IMPLEMENTATION OF
THE SIMPLIFIED REVIEW FRAMEWORK
AND THE OTHER INTERNAL CHANGES
THAT WE'RE SEEING AT CSR THAT WE
HEARD A BIT ABOUT TODAY FROM
THERESA IF HAVING A
REPRESENTATIVE COME BACK AND
TALK TO US ABOUT CHOSE CHANGES
WOULD BE HELPFUL TO THIS GROUP?
>> YEAH, THANK YOU THAT SOUNDS
INTERESTING.
AGREED.
I THINK MY JOB IS JUST TO TAKE
THE SUGGESTIONS, UNLESS, RALPH,
CAN YOU LET ME KNOW IF WE'RE
GOING TO RESOLVE ANY OF THIS OR
IS IT JUST TO --
>> YEAH, WE YEAH.
>> GREAT.
THANKS, CHRIS.
>> TIFFANY, IEE YOUR HAND.
>> THIS IS TIFFANY, I KNOW IN
THE UPDATE THEY MENTIONED SOME
OF THE FINALISTS FOR I THINK IT
WAS CALLED LIKE THE DISABILITY
PRIDE AWARD SORE SOMETHING, AND
I THINK THERE WERE 9
ORGANIZATIONS OR SOMETHING, I
THINK IT WOULD BE INTERESTING TO
MAYBE HEAR FROM THEM, AND ALSO
MAYBE SOME OF THE ORGANIZATIONS
THAT HAVE BEEN IMPACTED BY OUR
WORK AS WELL, ALSO REFLECTING ON
THE UPDATE THAT WAS SHARED
EARLIER ABOUT THE IMPACT THAT
WE'VE HAD.
NTHANK YOU TIFFANY.
LOVELY IDEA.
I'M INTERESTED IN THAT, TOO.
NYEAH, THIS IS ONLY THE BEGIN OF
THE DISCUSSION SO EVEN AFTER
THIS MEETING ENDS, IF YOU HAVE
OTHER IDEAS, FEEL FREE TO STAY
IN TOUCH WITH US.
OTHER TOPICS OR OTHER EVEN
DISCUSSIONS ABOUT HOW THE
MEETING WENT?
HOPEFULLY WE WILL GO BACK TO
HAVING IN-PERSON MEETINGS
PENDING OUR LOGISTICS AND
SUPPORT.
BUT ANY OTHER COMMENT THAT
PEOPLE HAVE ABOUT OUR DISCUSSION
ISSUES IT'S BEENAIN TENSE FEW
HOURS.
>> I'M CURIOUS, RALPH, DO YOU
KNOW NOW IF THERE WILL BE
IN-PERSON MEETINGS IN DECEMBER?
>> MMMMMM.
OKAY IN?
>> ALL RIGHT.
ANY,A HEAD MICHELLE,.
>> I WAS JUST GOING TO SAY THAT
THE HAVING THERESA PRESENT ON
THE THEMES, IF THERE COULD BE
FOLLOW UP EVEN THOUGH I'M NOT
GOING TO BE HERE, ABOUT THE
THEMES AND THEN ALSO ABOUT YOU
KNOW SUPPORTING KIND OF LIKE
REPORTING ON IF THE K12S ARE
GOING OUT, YOU KNOW MAYBE
REPORTING A BIT ON PROGRESS AND
HOW, IT MIGHT BE TOO SOON TO DO
THAT AT THE NEXT MEETING BUT IT
WOULD BE INTERESTING TO SEE HOW
THE REJUVENATION OF THE K12
SUPPORT, HOW DOES THAT KIND OF
STIMULATE THE PEOPLE PUTTING IN
AWARDS AND PUTTING IN REQUESTS
AND THINGS LIKE THAT.
NTHAT SOUNDS INTERESTING,
MICHELLE, I DO THINKIME CURIOUS
HOW THIS, HOW THE ENVIRONMENT
WILL CHANGE, WHAT KIND OF
APPLICATIONS ARE EVEN RECEIVED?
NOT SEEING ANY OTHER HANDS SO
PLEASE SPEAK UP IF I'M NOT
CALLING ON YOU.
>> EXCELLENT QUESTION, THAT GOES
TO OUR WHOLE ROLE AS PROGRAM
OFFICIALS AND HOW MUCH WE
SUPPORT THE INVESTIGATOR
INITIATED APPLICATION TO COME IN
AND HOW MUCH WE HAVE TO KIND OF
STIMULATE THE SYSTEM AND HOW
MUCH FLEXIBILITY WILL HAVE IN
THE FUTURE, SO, ALL OPEN
DISCUSSIONS.
THERESA DO HAVE YOU COMMENTS YOU
WANT TO SAY TO OUR --
>> YEAH, THANKS, RALPH.
I JUST WANTED TO COME ON TO SAY
THANK YOU TO ALL THE MEMBERS,
PARTICULARLY THE 1S WHO WERE
ENDING THEIR TENURE.
I HAVE HIT YOU ALL UP TO BE ON
VARIOUS SUBCOMMITTEES OVER THE
LAST 4 YEARS, AND I AM
INCREDIBLY GRATEFUL FOR THE TIME
AND THE THOUGHTFUL CONSIDERATION
OF ALL MY QUESTIONS THAT I'VE
HAD FOR YOU AND YOU HAVE ALWAYS
SHOWN UP PREPARED AND READY TO
CONTRIBUTE SO JUST A HUGE
THANKS, IT HELPS -- IT HELPS ME
AND RALPH AND THE REST OF THE
CENTER DO OUR JOBS WHICH IS ALSO
TO SUPPORT YOU ALL AND THE FIELD
MORE BROADLY.
YOU KNOW, WE HOPE TO BE SEEING
YOU OUT IN THE WILD A BIT MORE
THIS SUMMER, SO PLEASE DO SAY
HIGH TO US IF WE'RE AT A MEETING
AND WE GET THE CHANCE TO MEET
UP.
THERE'S STILL A LOT THAT'S UP IN
THE AIR THAT ABOUT HOW WE WILL
PROCEED AND WE JUST VERY MUCH
APPRECIATE YOUR PATIENCE, AND
YOUR FLEXIBILITY, AS WE GET
THROUGH THIS TRANSITION TIME.
RALPH?
IS THAT EVERYTHING?
>> I ALSO WANT TO JUST ADD AS
SHE WAS SAYING, YOUR ENERG
SEKIND OF WAKEEPS US GOING, YOUR
ENERGY, I WANT TO ACKNOWLEDGE
OUR VARIOUS NIH AND FEDERAL
AGENCY COLLEAGUES, THEY ARE PART
OF THIS BOARD AS WELL, AND TO
HAVE THEM TAKE AN ACTIVE
INTEREST IN WHAT THEY DO, THEY
HAVE BUSY SCHEDULES, TOO, AND IT
SHOWS THE VALUE OF THE MEET XG
WHAT FOLKS BROUGHT TO IT IT'S A
2 WAY STREET.
IT'S MOSTLY WHAT YOU BRING TO
THIS AND HOW WE SPREAD OUT THE
WORD TO THE COMMUNITY AS WELL.
SO I GUESS WHAT THAT WE CAN SAY
GOODBYE AND 1 BENEFIT OF THIS
VIRTUAL MEETING IS WE DON'T HAVE
TO CALL YOU ALL TAXIS, YOU DON'T
HAVE TO GO BACK TO THE AIRPORTS,
WE HAVE THAT SMALL ADVANTAGE,
BUT WE DO LOOK FORWARD TO SEEING
YOU FOLKS IN THE FLESH AND WE DO
APPRECIATE YOUR COMMENTS ABOUT
HOW MUCH YOU PREFER TO BE IN
PERSON.
SO I GUESS WE -- KATHLEEN,
YOU'RE THE NEW CHAIR, YOU SHOULD
ADJOURN THE MEETING.
MAKE THAT YOUR OFFICIAL DUTY.
>> ALL RIGHT, WELL EVERYONE
THANK YOU FOR MAKING THE TIME TO
BE HERE AND INTERACT AND ENGAGE
WITH EVERYBODY AND SHARE
INFORMATION AND I GUESS I'M
ADJOURNING THE MEETING.
I'M NOT SURE HOW I OFFICIALLY DO
IT BUT THANK YOU FOR COMING AND
FOR THOSE THAT ARE ON THE
COMMITTEE, PLEASE COME BACK IN
DECEMBER.
THANK YOU.
>> THANKS EVERYONE.
>> BYE-BYE.
>> THANK YOU.
>> BYE-BYE.