Seeking to bridge the transition from pediatric to adult care for people living with cerebral palsy, Debby and Peter A. Weinberg, with several of their family members and friends, have given more than $7 million to help establish the Weinberg Family Cerebral Palsy Center at Columbia University Medical Center (CUMC). Up until now, there has been only one other center in the United States that provides integrated, multidisciplinary care for both children and adults with cerebral palsy, and this is the first on the East Coast. The Center was officially launched this week, at events attended by Mr. and Mrs. Weinberg, Mayor Michael Bloomberg, CUMC Dean Lee Goldman, MD, and faculty and staff supporters of the new Center.
The new Center will coordinate care with specialists at CUMC and its affiliate, NewYork-Presbyterian Hospital/Columbia for patients of all ages, ease the transition of teenage patients into adult care, and educate caregivers and families while offering them support. In addition, the Center will lead basic and clinical research, and establish the first-ever nationwide cerebral palsy patient registry—helping researchers to overcome longstanding hurdles of lack of data on cerebral palsy patients and insufficient outcomes data, while providing a robust platform for multidisciplinary longitudinal research.
Debby and Peter A. Weinberg are the lead donors in this effort, in recognition of the support and care that their youngest son, who was diagnosed with a rare form of cerebral palsy at age 3 months, has received at CUMC. Additional gifts are from their friends and family.
"Today our son is 17 years old and a thriving junior in high school. We feel very grateful to Dr. David Roye and all of our son's physicians at CUMC for the dedication they have shown our family," said Debby Weinberg. "But we know that there are many young children with cerebral palsy and now a large and growing adult cerebral palsy population, who find it difficult and overwhelming to access the medical system. We hope that the Weinberg Family Cerebral Palsy Center at Columbia will provide a 'medical home' for these patients and make it easier for them to obtain the highest quality medical care."
"When our son began to transition from pediatric to adult care to manage his cerebral palsy, we realized that there is a vital need for adult specialized care to pick up where pediatric medicine leaves off," said Peter A. Weinberg, a founding partner of Perella Weinberg Partners L.P., a global financial services firm. "To help address this need, we are proud to be able to come together with our family and friends, to establish the Weinberg Family Cerebral Palsy Center at Columbia. We are committed to helping cerebral palsy patients, from newborns to adults, live to the best of their capabilities."
Cerebral palsy, a group of disorders that affect movement, speech, and cognitive function, strikes young children—from before birth to up to two years old. According to the Centers for Disease Control and Prevention, cerebral palsy occurs in one of every 278 births, making it three times more common than Down syndrome and nearly 30 times more common than muscular dystrophy.
Nearly 1 million people live with cerebral palsy in the United States. And a significant majority of cerebral palsy patients—nearly 9 out of 10—reach adulthood. Today, there are two to three times as many adults as children with cerebral palsy. Adult patients face unique challenges that often require specialized care; e.g., pain management, mobility problems, and aging-related conditions such as osteoarthritis and osteoporosis.
"As a growing number of patients with cerebral palsy move beyond their childhood, comprehensive medical care that addresses their specific needs is critical, as is research to continue to advance therapies for treating this population," said David P. Roye, Jr, MD, the St. Giles Professor of Pediatric Orthopaedic Surgery and director of the new Weinberg Family Cerebral Palsy Center at CUMC. "Medical issues that are almost unsolvable when patients come to us in their 40s could be averted if spotted earlier. While cerebral palsy is not a progressive condition, it does necessitate ongoing medical treatment into adulthood to offset medical issues, such as early joint degeneration, that can be extremely debilitating if left untreated."
The Center will expand upon the existing cerebral palsy services in pediatrics currently offered at CUMC and NewYork-Presbyterian/Columbia to create the only dedicated transitional care program on the East Coast and one of the only few in the country. Forty physicians from 20 specialties, including neurology, rehabilitative and regenerative medicine, cardiology, dentistry, and psychiatry, will be available to help patients manage their condition.
The Center will also extend Columbia's current cerebral palsy research portfolio. While basic science research focuses on discovering the disease mechanisms for cerebral palsy, clinical research conducted at the Center will focus on testing new treatments and understanding the impact of these treatments on patient outcomes and quality of life. The Center is partnering with the Cerebral Palsy International Research Foundation (CPIRF), which is funding a five-year multifaceted research program on the assessment and treatment of pain in adults with cerebral palsy. The Center has been funded by Columbia's Irving Institute for Clinical and Translational Research for the development and validation of an instrument, the Assessment of Caregiver Experience in Neuromuscular Disease, which is designed to measure cerebral palsy parent/caretaker experience. In addition, the Center is working with the Congenital Muscular Disease Consortium of the National Institutes of Health to develop and validate a test measuring quality of life in patients (and their caregivers) with various childhood onset neurodevelopmental disabilities.
"Our goal is for this new Center to become a nationwide model for an integrated research and treatment program to help patients with cerebral palsy—children and adults alike—manage their condition as best as possible," said Dr. Roye, who is also director of pediatric orthopaedic surgery, Morgan Stanley Children's Hospital of NewYork-Presbyterian/Columbia.