The mission of the Angelman Syndrome Foundation is to advance the awareness and treatment of Angelman syndrome through education and information, research, and support for individuals with Angelman syndrome, their families, and other concerned parties. We exist to give all of them a reason to smile, with the ultimate goal of finding a cure.
The Research Symposium brings together an outstanding community of researchers and clinicians to share unpublished work, participate in conceptual discussions and reflect on the big picture as it relates to Angelman Syndrome, Dup15q Syndrome, and pathways toward effective treatments. It provides the opportunity to educate and inspire our future scientists. In 2024, we are proud to offer collaborative training with Dup15q Alliance, to provide even more opportunities for professionals to receive training and resources based on the 15th chromosome abnormalities. The Angelman Syndrome Foundation + Dup15q Research Symposium fosters a space where diverse opinions and a wide range of expertise can unite.
Since 1991, the Angelman Syndrome Foundation has sponsored 17 family educational conferences that bring together the foremost authorities on Angelman syndrome.
The ASF Family Conference unites a diverse group of 1,000± individuals, including those with Angelman syndrome, their families, siblings, caregivers, clinicians, therapists, researchers, and friends.
Throughout the conference, attendees attend workshops, seminars, and presentations that cover a spectrum of topics, providing valuable insights into what we know about AS, how best to care for individuals living with AS throughout their lifetime, therapeutic approaches, and practical strategies related to Angelman syndrome.
Outside of education, attendees will experience community, connection, and celebration. These aspects are as integral as the conference’s educational components. Individuals and families who share similar journeys come together and create a network of support, understanding, and friendship.
Join us at the ASF Family Conference — a place where education, community, collaboration, and support come together to create an educational and empowering experience for all.
Just as the Angelman Syndrome Foundation is there to support those living with Angelman syndrome, it also envisions a future in which individuals with Angelman syndrome and their families will no longer be affected by the myriad of medical, behavioral, emotional, financial and practical issues that come with Angelman syndrome.
The ASF prides itself on funding the highest-quality research studies from the best AS research institutions, studies that have long-term results to improve the quality of life for people with AS, leading us closer to treatments and a cure.
Since 1996, 90 research grants have been awarded by the Angelman Syndrome Foundation, totaling over $14 MM dedicated to research toward therapeutics and a cure. These high-quality research results have leveraged over $140 MM additional expanded studies with the NIH, the DOD, the Simon’s Foundation and other funding sources. Over 100 research studies with researchers spanning the US and 10 countries across the globe. In short, the ASF does not limit its funding to a small group of researchers but seeks out the brightest and best to cure Angelman syndrome.
The Angelman Syndrome Foundation founded the AS Clinics to provide individuals with Angelman syndrome the specialized, comprehensive medical care they need, from birth through adulthood. The ASF has partnered with world-class, leading medical and research institutions across the US to establish AS Clinics to provide comprehensive medical care individuals with AS need, all in one location. Each clinic has its own unique capabilities that leverage a variety of expertise and specialized care available from each partnering organization.
Additionally, all clinics in the ASF AS Clinic Network are working together to establish standards of care for treatment of AS. Clinicians often consult with other clinicians at other network clinics and work together to find the best possible outcomes for their patients.
Beyond specialized medical care, the ASF currently funds—and will continue to fund—research that occurs at AS clinic sites. Data gathered from the AS Clinics is, and will continue to be, used to drive research for viable treatments and a cure for AS. The ASF AS Clinic network is THE only clinical framework established to support future clinical trials when they become available by having established sites with AS experts and patients in place. This has always been a part of the ASF research strategic roadmap. The ASF AS Clinic Network is intentional in its abilities to provide high-quality clinical care today, across the AS lifespan, as well as be THE platform for AS clinic trials.
The ASF Family Fund was created to provide financial assistance to families supporting individuals with Angelman syndrome. Family members can apply for funds that are needed to improve the quality of life for an individual with Angelman syndrome.
Even though caring for an individual with AS can be rewarding, we know that it can be challenging, stressful and isolating. Therefore, ASF is proud to offer counseling services at no charge to Angelman families in the United States.
Counseling Services are available for help in areas like (but not limited to):
Angelman syndrome can present some unique and challenging behaviors and with age, increasing anxiety. The ASF offers information and resources for understanding and solving many behavior issues. Information on consultations with behavior expert, Christopher Keary, MD and the Behavior Training Series are available on the ASF website, for free
Webinars by AS experts on AS-specific topics, including but not limited to research updates, clinical developments and help for daily living and management of AS is available and accessible to all AS families 24/7/365 and around the world.
The Communication Training Series was developed to break down often very complex communication training and instruction into smaller, simpler parts, where care providers and their support teams can go at their own pace as they are working with their special person with AS. The series includes training tools and how to use picture symbols, includes downloadable picture and symbol display templates and step-by-step instructions to start and continue a communication program at home and school, no matter the individuals age, skill level or location. The ASF Communication Series was developed by a leading team of experienced communication experts in AS and other non-verbal populations.
To date the ASF educational webinar and communication training series have collectively seen over 75,000 views. The series continue to be used extensively throughout the global AS community and a future goal is to translate the ASF Communication Series into Spanish.
The ASF Podcast is available on Spotify, Apple Podcast, Google Podcast and Buzzsprout. Each episode offers insightful discussion and in-depth explorations of the Angelman journey. Parents, researchers, and clinicians share their experiences, expertise and perspectives on various topics. From heartwarming personal stories to advancements in research and clinical care, the ASF Podcast provides a unique and comprehensive look into the world of Angelman syndrome.