Strength in Community
The strength of the Angelman community is life-changing for individuals with Angelman syndrome and their families.
Because of community support, Angelman families remain healthy, hopeful, and strong from diagnosis through adulthood.
When Sebastian was diagnosed with Angelman syndrome, his parents, John and Ana, had spent 3 years searching for answers. They were exhausted and overwhelmed. Finally, they received a call with a confirmed diagnosis of Angelman syndrome, deletion positive.
Reaching out to the Angelman Syndrome Foundation, John expected medical information. Instead, he spoke to someone who understood what they were going through. For the first time, they were no longer alone!
John later met Dr. Ron Thibert - a connection that would change Sebastian's life. Sebastian's seizures were devestating. Under Dr. Thibert's care and through an ASF-funded study, Sebastain began the Low Glycemic Index Treatment (LGIT) diet. His seizures stopped and his body and brain were able to heal.
Now, Sebastian is 20 years old and through the ASF's AS Grows Up program, the Sugden family has tools for medical transition, guardianship, day programming and long-term planning, and the confidence that they won't walk this journey alone.
John now serves as an ASF board member and is paying it forward so that no family ever feels as lost as they once did.
Over $17 Million in Research
ASF has funded research that is bringing us closer to treatments, like the first ever mouse model, the first ASO study, and the first CRISPR for Angelman study.
35 ASF Clinics Worldwide
Your support connects families with dedicated clinicians who specialize in Angelman syndrome. Individuals are able to receive care for complex challenges.
Critical Family Support
ASF provides free resources for every stage of life: Counseling, AAC training, educational webinars, consults with experts, the ASF Family Fund and more.
"At the ASF, we know that the Angelman community is our biggest strength. Time and again, your resilience, generosity, and love inspire us to aim higher and work harder.
Your belief in our mission shows the world that Angelman syndrome is not just a diagnosis . . . It is a call to action.
Thank you for standing with us and proving that when community unites, there is nothing we cannot achieve."
