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Advocacy Newsletter - August 2022


Join us for the fourth United Against Ataxia Hill Day happening virtually on September 21, 2022. FARA advocates will join their colleagues from NAF to raise awareness about ataxia and the legislative action needed to accelerate treatments to our communities.

The momentum around advocacy has continued to grow over the last few years and the results speak for themselves. Advocates have drawn attention to the need to robustly fund the NIH and FDA, and appropriations have increased each year. The FARA and NAF community supported the ACT for ALS, a bill that increases resources to the neuromuscular community, and saw it signed into law in December 2021. For the last two years, bipartisan support was secured for a Senate Resolution recognizing September 25 as National Ataxia Awareness Day. And, just this spring, FA was added to the Congressionally Directed Medical Research Program (CDMRP) for fiscal year 2022. These amazing actions were a direct result of the support and commitment of our community...but, unfortunately, the work is not done!

This month's Advocacy Newsletter covers the following topics:

  • United Against Ataxia Hill Day
  • Capitol Hill Updates
  • Upcoming Advocacy Events
  • Announcements

More...

Read the full August Advocacy Newsletter
 
 

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