On July 9, Texas Children’s Hospital and the Angelman Syndrome Foundation celebrated the official opening of the Angelman Syndrome Clinic at Texas Children’s, one of only seven Angelman syndrome-specific clinics in the United States – and the first in Texas.
Several patient families gathered on the 16th floor of Wallace Tower to attend the ribbon cutting ceremony. Debbie Sukin, the daughter of the late Dr. Ralph Feigin, delivered the opening remarks and shared how this new clinic will benefit her 16-year-old son Jacob and so many other children diagnosed with Angelman Syndrome.
“The hardest part of advocating and managing a child with Angelman Syndrome is trying to understand what might be wrong when they aren’t feeling right, looking right or acting right,” Sukin said. “We’re confident that this multidisciplinary clinic here at Texas Children’s will provide all children the expertise and best chance at meeting their maximum potential and provide guidance to ensure the best outcome.”
Occurring in one in 15,000 live births, Angelman syndrome is a neurogenetic disorder often misdiagnosed as autism or cerebral palsy that causes severe neurological impairment. Often times, these patients experience developmental delays, lack of speech, seizures, and walking and balancing disorders.
With the creation of this new clinic established through the generosity of donors and in partnership with the ASF, patients and their families now can access multiple specialists – experts in Angelman syndrome, clinical geneticists, neurologist, psychiatrist, speech language pathologist, genetic counselors and social work – in one setting rather than visiting multiple locations across the nation to manage and treat this disease.
“Thanks to the help of the ASF, we are proud to further our mission of providing very specialized care for patients with Angelman syndrome,” said Chief of Neurology Dr. Gary Clark. “Given the science that’s being developed at the NRI at Texas Children’s in genetics and neurology, we are making great strides in helping these patients.”
The ribbon cutting event also included remarks from Dr. Carlos Bacino, chief of the Angelman Syndrome Clinic, Carrie Rys, assistant vice president, and Eileen Braun, executive director of the Angelman Syndrome Foundation, whose organization donated $50,000 to advance Angelman syndrome research at Texas Children’s.
“Opening this clinic brings us one step closer to our commitment to establish a network of clinics across the country,” Braun said. “We could not be more proud to support Texas Children’s and their remarkable team of professionals in bringing this clinic to life. We look forward to impacting the lives of so many more families.”
Click here to learn more about our Angelman Syndrome Clinic at Texas Children’s.