ACTION ALERT

Tell Your State Attorney General to Stop Attacking Section 504

Several states are moving to weaken Section 504, a core disability rights protection. Urge your state attorney general to defend it.

ACTION ALERT

Take Action to Protect Special Education

A federal proposal would move special education, vocational rehabilitation, and disability civil-rights offices out of the Department of Education — risking delays for families seeking supports.

The Angelman Syndrome Hope in Action Center

Every family affected by Angelman syndrome deserves a seat at the table — in Washington DC, in state capitols, and at the FDA. Angelman Advocates gives you the tools, resources, and community to make your voice impossible to ignore.

A multi-tiered approach to advocacy for Angelman syndrome.

The Angelman Syndrome Foundation (ASF) and the Foundation for Angelman Syndrome Therapeutics (FAST) are united and committed to making a significant impact in the Angelman syndrome community through grassroots advocacy.

Federal Agencies

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Increase federal agency – such as the Food and Drug Administration (FDA) and the National Institutes of Health (NIH) – understanding of and focus on the AS population.

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Directly engage federal agencies through public meetings.

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Participate in FDA’s patient focused drug development (PFDD) by surveying the community on patient and family preferences and providing this information to the FDA.

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Work collaboratively with regulators on biomarker and endpoint development.

Congress

1

Increase the federal understanding and focus on Angelman syndrome

2

Lead appropriations requests for federal funding of Angelman syndrome research and federal agency focus on Angelman syndrome.

3

Support, lead, or monitor legislation related to

Ensuring access to necessary health care services and supports.
Improving rare disease drug development.
Improving services and support for caregivers.
Improving disability and accessibility policy.
Ensuring early diagnosis.
Create relationships with members of Congress and turn them into champions for AS.

State

1

Advocate for improving state programs related to services, long-term care, therapies, caregiver expenses, disability policy, and waiver programs.

2

Help spread awareness by obtaining proclamations for Angelman syndrome awareness day.

3

Support state legislation aimed at newborn screening

A Message from Ryan Fischer & Amanda Moore

The Foundation for Angelman Syndrome Therapeutics (FAST) and the Angelman Syndrome Foundation (ASF) formed a strategic partnership to drive a coordinated, multi-tiered advocacy strategy to improve the lives of those affected by Angelman syndrome.

Both organizations understand the need to ensure key decision makers understand Angelman syndrome to influence and inform policy, legislation, and funding related to AS. We cannot accomplish our goals without YOU – caregivers, family, friends, research, and clinical partners. Please consider joining the AS Advocacy movement: Learn More

Sincerely,