On July 9, 2018, several patient families, physician leadership and representatives from the Angelman Syndrome Foundation (ASF) gathered on the 16th floor of Mark Wallace Tower for a special celebration and ribbon cutting commemorating the official opening of the Angelman Syndrome Clinic at Texas Children’s Hospital. The clinic is one of only seven Angelman syndrome-specific clinics in the United States – and the first in Texas.
Debbie Sukin, daughter of the late Dr. Ralph Feigin – renowned pediatrician and Texas Children’s physician-in-chief for more than 31 years – 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 with the expertise and the best chance at meeting their maximum potential, and provide guidance to ensure the best outcome.”
Angelman is a neurogenetic disorder that occurs in only one in 15,000 live births. Because it causes severe neurological impairment, it is often misdiagnosed as autism or cerebral palsy. Patients experience symptoms such as developmental delays, lack of speech, seizures, and walking and balancing disorders.
The clinic was established through the generosity of donors and in partnership with the ASF. Now, rather than visiting multiple locations across the nation to manage and treat this disease, patients and their families have access to comprehensive care in one convenient, family-focused setting. This includes expertise in Angelman syndrome and numerous specialty and subspecialty areas such as clinical genetics, neurology, psychiatry, speech and language pathology, genetic counseling and social work.
“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 Jan and Dan Duncan Neurological Research Institute 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 ASF, 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.”
Learn more about the Angelman Syndrome Clinic at Texas Children’s Hospital.