The Angelman Syndrome Hope in Action Center
Welcome
The Foundation for Angelman Syndrome Therapeutics (FAST) and the Angelman Syndrome Foundation (ASF) have established a strategic partnership to implement a coordinated, multi-tiered advocacy strategy aimed at enhancing the lives of individuals affected by Angelman syndrome.
Both the FAST Angelman team and the ASF recognize the importance of educating key decision-makers about Angelman syndrome to effectively influence policy, legislation, and funding related to this condition.
We cannot achieve our objectives without YOUR support – caregivers, family, friends, research, and clinical partners. We invite you to join the AS Advocacy movement: Learn More.
Sincerely,
Ryan Fischer (COO of FAST) & Amanda Moore (CEO of ASF)
Multi-Tiered Approach to Advocacy
FDA
Congress
Congress
Increase the FDA’s understanding of the Angelman syndrome population through surveying the community on key areas where the FDA needs input, in collaboration with the Angelman Syndrome Foundation. Directly engage members of the FDA through public meetings organized by the Foundation for Angelman Syndrome Therapeutics. Work collaboratively
Increase the FDA’s understanding of the Angelman syndrome population through surveying the community on key areas where the FDA needs input, in collaboration with the Angelman Syndrome Foundation. Directly engage members of the FDA through public meetings organized by the Foundation for Angelman Syndrome Therapeutics. Work collaboratively with regulators on biomarker and endpoint development as part of the Fast Angelman initiative.
Congress
Congress
Congress
Increase the federal focus and funding on Angelman syndrome by collaborating with the Angelman Syndrome Foundation. Support, lead, or monitor legislation related to improving rare disease drug development, as well as enhancing services and support for caregivers and disability policy. Additionally, work to create relationships with member
Increase the federal focus and funding on Angelman syndrome by collaborating with the Angelman Syndrome Foundation. Support, lead, or monitor legislation related to improving rare disease drug development, as well as enhancing services and support for caregivers and disability policy. Additionally, work to create relationships with members of Congress to turn them into Champions for AS, promoting initiatives like FAST Angelman and the Foundation for Angelman Syndrome Therapeutics.
State
Congress
State
Advocate for improving state programs and funding related to long-term care, therapies, caregiver expenses, disability policy, and waiver programs, aligning with the goals of the Angelman Syndrome Foundation. Help spread awareness for Angelman syndrome awareness day by obtaining proclamations that highlight the importance of recognizing c
Advocate for improving state programs and funding related to long-term care, therapies, caregiver expenses, disability policy, and waiver programs, aligning with the goals of the Angelman Syndrome Foundation. Help spread awareness for Angelman syndrome awareness day by obtaining proclamations that highlight the importance of recognizing conditions like fast Angelman syndrome. Support state legislation aimed at newborn screening, which is crucial for early detection and intervention in cases related to the Foundation for Angelman Syndrome Therapeutics.