Reveling in the Work of Our Rose F. Kennedy Center Programs and Research
On Friday, April 21, 2023, the inaugural Rose F. Kennedy Center Day offered an occasion for reflection, celebration, and hope.
The event honored 50-plus years of revelatory work from Einstein’s Rose F. Kennedy Center, which specializes in research, education, advocacy, training, and clinical services for those with autism and intellectual and developmental disabilities (IDDs). It marked Einstein’s continuing dedication to its programs’ shared mission and highlighted the work of our Intellectual and Developmental Disabilities Research Center (IDDRC), Children’s Evaluation and Rehabilitation Center (CERC), University Center of Excellence for Developmental Disabilities (UCEDD), and Leadership Education in Neurodevelopmental Disabilities (LEND) training program.
Celebrating a Rich History
In welcoming audience members, Steven Walkley, D.V.M., Ph.D., gave a history of the center. He noted that, in 1966, President John F. Kennedy’s mother Rose and brother Robert helped break ground for the center, which, thanks to the vision of the center’s first director, Dr. Harry Gordon, opened in 1970 to host cutting-edge research aimed at improving the lives of individuals and families affected by IDDs alongside a strong clinical care facility.
The center’s program leaders welcomed a wide range of experts—scholars, trainees, and those whose expertise is more personal: the people living with IDDs every day— to Robbins Auditorium. Some 175 people, including parents, community partners, and the public, attended in person and via Zoom to learn about the center’s work and be inspired by personal stories from self-advocates and family members.
Following initial introductions, which included a welcome from, Gordon F. Tomaselli, M.D., Einstein’s Marilyn and Stanley M. Katz Dean and Dr. Philip O. Ozuah, M.D., Ph.D., president and CEO of Montefiore Medicine, , a panel of speakers explored each RFK Center program and its respective contributions to studying, treating, and advocating for IDDs.
Sophie Molholm, Ph.D., who with Dr. Walkley co-directs the RFK IDDRC, noted its “active support for collaboration among scientists and clinicians.” To highlight this, a component of the event was an exhibit along Einstein’s Main Street, in Forchheimer, offering examples of the research underway by Kennedy Center members at Einstein and Montefiore. The exhibit featured 33 research posters on work focused on IDDs and rare diseases.
Providing Training and Resources
It’s often said that it takes a village to raise a child. Lisa Shulman, M.D., interim director of the RFK CERC, observed, “CERC truly is that village for families with children with developmental disabilities.” Through the interdisciplinary service programs at the center, provided to children and adults with IDDs, the objective is to promote health and well-being throughout the lifespan by taking a “disability-informed” approach to integrated care. CERC staff offer a wide variety of premier diagnostic and therapeutic services to meet patient needs.
In addition to clinical services, CERC provides essential training to clinicians through the center’s federally funded LEND grant, which is designed to train professionals to become the next generation of leaders in the care of those with IDDs.
The center’s strong advocacy mission is recognized by a UCEDD grant. Self-advocate Paul Rivera highlighted efforts to remove transportation barriers for people in wheelchairs. “Advocacy changes lives,” said Joanne Siegel, L.C.S.W., who co-directs UCEDD with Karen Bonuck, Ph.D. She added, “It breaks down barriers to care, and is empowering.”
Other Highlights of the Day
Program leads, parents, and self-advocates discussed specific projects, including efforts by the IDDRC’s IDD Gene Team to bring together pediatricians, families, and scientists knowledgeable about a disease. “Everyone emerges transformed by the experience,” said Dr. Walkley.
Robert Marion, M.D., distinguished university professor emeritus, offered the keynote address, praising “The Yin and Yang of the Rose F. Kennedy Center.” Dr. Marion is a former director of CERC and a medical geneticist. He was introduced by another lauded former director of CERC, Herb Cohen, M.D. Later, parent advocate Lisa Manaster thanked Dr. Marion for inspiring her to launch a foundation studying her child’s condition.
Among the posters along Main Street was work also highlighted during February and March when the IDDRC marked Rare Disease Day. An annual offering of the IDDRC, that event focused on “Adults with Rare Disease as Advocates” and spotlighted people who live with and advocate for Gaucher disease, maple syrup urine disease, Williams syndrome, and late-onset Tay-Sachs disease.
Like Rare Disease Day, RFK Center Day, will now be celebrated annually, showcasing collaborative programs offering vital IDD resources and providing hope. Parent Amy Robl, who took part in a panel discussion with Dr. Shulman and Julie Secombe, Ph.D., appreciated the chance for families to “meet each other and meet the people studying our kids’ rare disorders,” calling it “the most moving, special experience”—a sentiment echoed by parent advocate Paola Jordan.
Danielle Lanzetta, who receives multiple services through RFK Center programs, summed up what many felt: “I learned the art of self-advocacy there, and to advocate for others like me. The Kennedy Center is where I found my voice.”
Posted on: Monday, June 05, 2023