Newswise — WASHINGTON, March 7, 2024 -- The Angelman Syndrome Foundation (ASF) and the Foundation for Angelman Syndrome Therapeutics (FAST) are hosting the inaugural Angelman Syndrome (AS) Congressional Advocacy Day in Washington, D.C.
Angelman syndrome advocates from all corners of the country will head to Capitol Hill to educate Members of Congress about the critical need to invest federal resources in AS specific priorities and programs at the Department of Defense (DoD), Food and Drug Administration (FDA), and the National Institutes of Health (NIH). This marks a significant day as these two prominent organizations come together to advance legislative and policy priorities for AS.
Angelman syndrome is a rare, neurological disorder that impacts approximately 1:15,000 individuals. Common characteristics of AS include a happy demeanor, frequent laughter and many smiles, but there are also significant challenges that most individuals living with AS face such as being non-verbal, prone to seizure activity, disrupted sleep, and difficulty with gross and fine motor activities. Current research and future potential treatments have the chance to improve the quality of life for those living with AS.
Ryan Fischer, COO of FAST highlights the importance of this step for the AS community, stating, "This event marks a historic day for the community, as it is the first ever organized Hill day for Angelman syndrome. We must ensure those representing us in Washington D.C. understand the need for increased federal focus and funding for AS. This is just the start of our collective movement to drive policy and legislation forward to improve the lives of all those diagnosed with Angelman syndrome and their families."
As the community comes together in the nation's capital, advocates are highlighting the urgent need for federal funding of AS research programs. Included in this year's requests:
- Have Angelman syndrome included in the Department of Defense peer-reviewed medical research program;
- Push FDA to include more sensitive outcome measures, growth scale values, and expanded research on clinical endpoints and biomarkers;
- Have NIH convene stakeholders to prepare a roadmap for clinical outcome measures and biomarkers for Angelman syndrome;
- A non-policy priority of the event is relationship building with congressional offices and bringing awareness to the disease.
Amanda Moore, CEO of ASF, comments on the monumental nature of the event and partnership, "As the Angelman syndrome community gathers in Washington, D.C., we emphasize the critical importance of federal funding for research programs. By uniting our voices and advocating for inclusion in vital departments such as the Department of Defense and the National Institutes of Health, we strive to bring hope and progress to our community. Together, with determination and collaboration, we aim to create a future with more smiles and fewer struggles for individuals affected by Angelman syndrome."
About the hosting organizations
The Angelman Syndrome Foundation (ASF) and the Foundation for Angelman Syndrome Therapeutics (FAST) are two organizations united in their commitment to making a significant impact in the Angelman syndrome community.
ASF's mission is to advance awareness and treatment of Angelman syndrome through education, research, clinical care and unwavering support for individuals with AS, their families, and all concerned parties. They are dedicated to improving lives and fostering understanding. (angelman.org)
FAST, as the leading patient advocacy organization, has one goal: to cure Angelman
syndrome. The largest funder of Angelman syndrome research in the world, their mission is to
drive forward transformative research and development programs as quickly as possible for
those living with Angelman syndrome — regardless of age or genotype. (cureangelman.org) (cureangelman.org)
Together, ASF and FAST combine their strengths and expertise, creating a powerful force that drives progress, offers support, and seeks cures for Angelman syndrome. Our collaborative efforts epitomize our shared dedication to making a lasting difference in the lives of those we serve.
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