Angelman Syndrome Clinics across the U.S.
ASF invests $1.5 million to support 17 Angelman Syndrome Clinics across the U.S.
Furthering its direct support of individuals with Angelman syndrome and their families, the Angelman Syndrome Foundation has committed $1.5 million to establish 17 comprehensive Angelman Syndrome Clinics across the country during the next few years. The ASF has strategically identified locations that are within a 4-hour driving distance for more than 85% of the AS population in the U.S.—meaning a majority of families (>85%) in the U.S. will not have to travel more than four hours to access their nearest clinic, which is a primary goal of the ASF’s in making the clinics as accessible as possible. Each clinic will receive a three-year funding commitment of $50,000 the first year, $30,000 the second year, and $10,000 the third year, to establish the clinics and support them until they are self-sustaining.
Currently, there are two Angelman Syndrome Clinics established in Chapel Hill, NC and Boston, MA. The ASF is in the final stages to open the next clinic in Rochester, MN and has requested proposals to establish the next clinics in San Diego and Houston, with Chicago to follow.
The purpose of the ASF’s Angelman Syndrome Clinics is to:
- Provide a “one-stop-shop” medical and psychosocial resource from birth through adulthood for individuals with AS
- Provide a foundation to support future clinical trials by having established sites with AS experts and patients in place to conduct those trials when they become available
- Provide access to a variety of individuals all specializing in AS: clinical geneticist, neurologist, psychiatrist, psychologist, speech language pathologist, physical/occupational therapist, genetic counselor, social worker, and nutritionist