Intellectual and Developmental Disabilities Research Center Birth of Hope for People with Intellectual Disabilities: 50 Years and Counting

IN THIS ISSUE SPRING/SUMMER 2017 • ISSUE 7 EINSTEIN 2 Rapin Conference: Tuberous Sclerosis 3 Rare Disease Day Albert Einstein College of Medicine OF YES HIV A U N I VER S I T Y 3 Featured Investigator: Suzanne Zukin Science at the heart of medicine 4 Awards, Grants & Updates NEWS Rose F. Kennedy Intellectual and Developmental Disabilities Research Center Birth of Hope for People with Intellectual Disabilities: 50 Years and Counting “Although we have attacked on the broad front the problems of mental illness, although we have made great strides in the battle against disease, we as a nation have for too long postponed an intensive search for solutions to the problems of the mentally retarded.* That failure should be corrected.” – President John F. Kennedy October 11, 1961 week after President Kennedy spoke these words at a news con- A ference, Eunice Kennedy Shriver hosted a meeting of the 27-member President’s Panel on Mental Retardation Rose (fourth from right) and Robert Kennedy (third from right) at the groundbreaking at the White House. The panel, headed of the Rose F. Kennedy Center in November 1966. by Dr. Leonard Mayo, was charged with delivering—within a year—a report on its report. It recommended development disability. People soon realized that the what the nation should do to address of research facilities (called Mental president’s October 1961 news confer- the problem raised by the president. Retardation Research Centers or MRRCs) ence had held personal meaning; one The panel quickly broke into two to advance understanding of the causes of his siblings was affected. In October factions, one headed by Dr. Seymour of the condition, and university-afﬁliated 1963, just three weeks before he was Kety and other scientists who empha- facilities (UAFs) to address the need for assassinated, President Kennedy signed sized the importance of basic research, excellent clinical care for those affected. into law PL88-164, which established 12 the second by Dr. Anne Ritter and At around the same time, an article MRRCs and 18 UAFs. other behavioral/social scientists who appeared in the Saturday Evening The MRRCs were to be funded by advocated for high-quality clinical Post in which Eunice Kennedy Shriver a newly established section of the care. In 1962, after a year of debate, revealed for the ﬁrst time that her sister, National Institutes of Health (NIH), the President’s Panel delivered Rose Marie Kennedy, had intellectual (continued on page 2) *At the time these words were spoken “mental retardation” was the accepted term for the condition we now know as “intellectual disability.” Newsletter for the Rose F. Kennedy Intellectual and Developmental Disabilities Research Center Birth of Hope forfor thethe MentallyIntellectually Retarded Disabled (continued (continued from pagefrom page1) 1) known as the National Institute of constructionRose and Robert of a newKennedy MRRC, attended which theneuroscience leadership ofin Dr.the Dominickcountry, under Purpura, the Child Health and Human Development wouldgroundbreaking bear the name ceremonies of the late for thepresi - wholeadership succeeded of Dr. Dr. Dominick Gordon asPurpura, the center’s (NICHD), which had been created as dent’sconstruction mother. of a new center, which director.who succeeded Dr. Gordon as the a result of lobbying efforts made by wouldAs Rose bear Kennedy the name said of the during president’s this center’sTo celebrate director. these successes, and in Eunice Kennedy Shriver and others on momentousmother. event, “Fifty years ago anticipationTo celebrate of future these advances successes, in inteland -in behalfon behalf of the of theKennedy Kennedy family. family. In 1987, whenAs IRose was seekingKennedy help said for during my own this lectualanticipation disability of futureresearch advances and treatment, in intel- MRRCsFollowing changed widespread their collectiverecognition name of the daughtermomentous who event, was retarded, “Fifty years there ago was welectual are holding disability a 50thresearch anniversary and treatment, sym- topejorative Intellectual nature and of Developmental the term ‘mental nowhen place I was to seekingturn. I was help bewildered, for my own posiumwe are forholding the Rose a 50th F. Kennedy anniversary IDDRC sym - Disabilitiesretardation,’ Research the NICHD Centers changed (IDDRCs). the frustrateddaughter whoand heartbrokenwas retarded, to there learn was how onposium November for the 2, Rose2017. F. Please Kennedy mark IDDRC your nameA key of theadvisor MRRC’s to the to KennedysIntellectual dur and- littleno place was knownto turn. and I was how bewildered, little could be calendarson November for this 2, important2017. Please event. mark your Developmental Disabilities Research frustrated and heartbroken to learn how calendars for this important event. ing this period was Dr. Robert Cooke, done...I hope my name, as a mother of – Steven U. Walkley, director, the Centers (IDDRCs). little was known and how little could be a prominent pediatrician at Johns a retarded child, may bring faith and –Rose Steven F. U.Kennedy Walkley, Intellectual director, the and HopkinsA key whoadvisor himself to the had Kennedys two children during hopedone...I and hope confidence my name, to asother a mother mothers, of a Rose F. Kennedy Intellectual and Developmental Disabilities this period was Dr. Robert Cooke, a retarded child, may bring faith and hope Developmental Disabilities with intellectual disability. A colleague as they realize the perseverance and Research Center (RFK IDDRC) ofprominent Dr. Cooke’s pediatrician in Baltimore at Johns was another Hopkins zeal,and confidencethe self-sacrifice to other and mothers,devotion, as ofthey Research Center (RFK IDDRC) pediatrician,who himself hadHarry two Gordon, children who with in 1962 scientistsrealize the and perseverance doctors working and zeal, here.” the wasintellectual recruited disability. to Albert A Einsteincolleague College of self-sacrificeOver the past and half devotion, century, ofwe scientists have SAVE THE DATE! ofDr. Medicine. Cooke’s in Once Baltimore here, wasDr. Gordon, another comeand doctors to better working understand here.” the causes undoubtedlypediatrician, Harrythrough Gordon, the influence who in 1962 of of intellectualOver the past disability half century, and ways we tohave RFK IDDRC will celebrate its was recruited to Albert Einstein College come to better understand the causes of Dr. Cooke, set out to bring one of the treat it. The Rose F. Kennedy Center has 50TH ANNIVERSARY on covetedof Medicine. 12 MRRCs Once here,to Einstein. Dr. Gordon, beenintellectual at the disabilityforefront ofand many ways of to these treat undoubtedlyHis effort was through successful, the influence and in 1966, of developments;it. The Rose F. Kennedyin 1974, theCenter center has also been Thursday, November 2, 2017! RoseDr. Cooke, and Robert set out Kennedy to bring attended one of the gaveat the rise forefront to one ofof manythe first of thesedepartments devel- Mark your calendars; details to follow! groundbreakingcoveted 12 MRRCs ceremonies to Einstein. for the ofopments; neuroscience in 1974, in thethe country,center also under gave His effort was successful, and in 1966, rise to one of the first departments of THE FIFTH ANNUAL ISABELLE RAPIN CONFERENCE: TUBEROUS SCLEROSIS n November 8, 2016, the Rose F. Kennedy chief scientific officer of the Tuberous Sclerosis Alliance; Peter Intellectual and Developmental Disabilities Research Crino, M.D., Ph.D., professor and chair of neurology at the OCenter (RFK IDDRC) hosted its fifth annual Isabelle University of Maryland School of Medicine; and Michael Wong, Rapin Conference, named for the late professor emerita of M.D., Ph.D., the Allen P. and Josephine B. Green professor the Saul R. Korey Department of Neurology and the depart- of pediatric neurology at the Washington University School ment of pediatrics. Each year, the conference focuses on a of Medicine. genetically based neurodevelopmental disorder, or a group From Einstein-Montefiore, the event featured Fatema of such disorders, that is of particular interest to the clinical Malbari, M.D., director of the Montefiore Neurocutaneous and research community at Einstein-Montefiore. Center, and Adam S. Levy, M.D., director of pediatric neuro- This year, the focus was tuberous sclerosis (TS), a rare, oncology at CHAM. multisystemic genetic disease that causes the growth of The IDDRC-sponsored event also included a presentation by benign tumors all over the body, including, in some cases, Luisa Vidal, a TS family caregiver, who offered a personal view in the brain and other vital organs. Like many genetic of the disorder. For more details, go to www.einstein.yu.edu/ disorders, TS is highly variable, with some patients exhib- docs/centers/iddrc/Rapin-2016-Program.pdf; for video, see iting many more signs and symptoms than others. The www.einstein.yu.edu/centers/iddrc/seminars-workshops/. complexity of TS requires the kind of multidisciplinary approach that has become a hallmark of the Einstein- Montefiore system; clinicians actively and comprehensively treat people with the disease at the Neurocutaneous Center at the Children’s Hospital at Montefiore (CHAM) in the Bronx (www.cham.org/programs-centers/ neurocutaneous-center). The November conference included a number of notable speak- Back row, left to right: Steven U. Walkley, director of the IDDRC; Melissa P. ers, among them Elizabeth A. Thiele, Wasserstein; Peter Crino; Michael Wong; and Solomon L. Moshe. Front row, left M.D.,

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