Small commitment. Big impact.

ASF Committees

The ASF is very grateful to the volunteers who use their special talents or areas of interest to contribute to the Angelman community. 

Want to get involved?  Submit your information via the form below and you will be contacted by a committee member.  

Advocate for Angelman syndromeThe ASF Advocacy Committee continues to provide information to the AS community about important regulatory and legislative issues at both the state and federal levels that may have ramifications on the AS community.  Committee members learn how they can advocate for positive change.

Advocacy task force members identify, consider and develop AS positions on long-term policy issues, and serve as a resource for legislators and their aides. This is a non-partisan committee that does not endorse any political candidate or party. 

What does the Advocacy Task Force do:

  • Advocate for access to affordable and accessible health care
  • Join the Rare Disease Caucus
  • Engage in Rare Disease Week where we hold meetings with local representatives to advocate on issues crucial to the AS community. 
  • Advocate for continued funding for FDA to advance rare disease trials and treatments.
  • Support Newborn Screening Acts Saves Life
  • Creation of a Burden of Disease Report that provides a comprehensive assessment of the total economic burden of AS in a single year. This will help ensure that the experience of the AS community is reflected accurately in policy discussions.
  • Some members also serve on the Community Congress
  • Work with other organizations that advocate for rare diseases such as Everylife Foundation and GlobalGenes.

The committee is lead by Becky Burdine and Susan Ravellette. Expected commitment is approximately 5 hours per month. 

Open to new members

Sydney

The Adult Task Force helps develop ideas, educational pieces and materials that the ASF can provide to support adult individuals with Angelman syndrome and their caregivers.

See the Adult Resources page for resources specifically for adults that were created and cultivated by the Adult Task Force. 

 

This committee is lead by Lesley McCallister and Robin Wilkerson.

Open to new members

Band and dancing at the 2019 ASF Family Conference    Just for moms group at the 2019 ASF Family Conference

This group helps plan and make decisions about the next ASF Family Conference to ensure that it is as fun as it is educational and transformational.

This committee is lead by Lesley McCallister.

This group has limited room for new members on subcommittees. 

ASF Care Committee

The ASF Care Committee is a group of parents, extended family members, friends and professionals who are passionate about encouragement and support. Their goal is to brighten the day of individuals and caregivers living with Angelman syndrome.

Due to high shipping costs, this service is open to those in the US only.

 

This committee is lead by Christie Gould. 

Open to new members

Know someone who could use some encouragement?

Fill out the request form below and the Care Committee will send them a “box of sunshine.” 

Interested in joining a committee? 

Fill out the form below and you will be contacted by a committee member. 

    *The ASF Family Conference Committe has openings on a few subcommittees.

Sunshine from the Care Committee Request

The Care Committee was created to bring a encouragement and support to those in the Angelman community, both individuals and their caregivers! Is there someone you know that could use encouragement? Please fill out the form below and the Care Committee will work to bring them a little sunshine in the form of a card or package.
  • (in case we need to follow-up or have a question)