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News & Press Releases

Here you will find the most recent organizational news from FARA, including information on events, and awareness and advocacy initiatives. To locate an article from a certain date, please use the archives on the right side of your screen.

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


Read the full August Advocacy Newsletter

FARA's Annual Donor Impact Report

Can't see this document? Click Here


Monthly Update - July 2022

FA App Icon

Dear friends,

The 'Virtual Research' section of the FA App has gone live with the first academic research trial that you can enroll in and participate in directly via your phone.

Log in to the FA App and click on 'Research' and 'Virtual' and see the new study which has been posted. If you have removed The FA App from your phone, you can reinstall from the App Store or Google Play and login.

This first study required 15 FAers and 15 control subjects per age bracket. Thanks to all the FAers who have already enrolled and helped the study to reach its target for participants with FA in just a few weeks. The study is in need of more control subjects. We anticipate more virtual research opportunities in the future and new features based on community feedback.


Jennifer Farmer,
FARA Chief Executive Officer

Other topics in our July Monthly update:
  • Recently Funded Grants
  • FA Woodstock
  • Minutes of Science
  • NIH BRAIN Initiative Challenge
    "Ethical Considerations of Brain Technologies"
  • Cure FA Soirée
  • Registration Open for United Against Ataxia Hill Day September 21, 2022
  • The FARA Energy Ball
  • Branding Science Survey
  • MPR News: Rare disease research at the University of Minnesota holds global promise
  • Open & Enrolling Studies

Read the Full Monthly Update

FA Researcher Monthly Update - July 2022

Research news banner image

This month's Update for Researchers covers the following topics:

  • ICAR 2022 – Registration is Open!
  • NIH BRAIN Initiative Challenge
  • Recent FARA Funded FA Publications
  • Recent FA Publications
  • FARA Newly Awarded Research Grants
  • FARA Forum Webinars
  • Grant Opportunities
  • Meetings of Interest to the FA Community

Read the full FA Researcher Monthly Update

Minutes of Science - Episode 13: Hand and Arm function in FA

Check out the latest episode in the Minutes of Science series!

Episode 13 talks about Hand and Arm function in FA.
Narrated by: Heidi Bromley

View the full playlist

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