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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.

Registration Now Open!- United Against Ataxia Hill Day

United Against Hill Day Image 2022
Registration Has Opened!
Your Congressional Members need to hear from you to fully understand what Ataxia is and what legislative action is needed! Join us in raising the awareness on Ataxia, needed research funding and ways to expedite treatments. The power to create change starts with you!

Please join us for the fourth United Against Ataxia Hill Day on September 21, 2022. All meetings will be virtual and run approximately 15-30 minutes in duration. You will be assigned 2-5 meetings between 9 am and 5 pm.

Registration requires two steps.
  • Sign up for Hill Day HERE! - Registration will close on August 31, 2022
  • Sign up for a one hour required training on August 10 at 7 pm ET HERE!
Important! Your Congressional meetings with not be scheduled until you complete the training.

If you cannot attend the training on August 10, or have any other questions, please contact Lori Shogren,, or Brigid Brennan,

Monthly Update - June 2022

Dear friends,

The Pathway donors help fund research progress through a monthly gift to FARA. Since the program was launched in August 2020, this community of donors has raised over $110,000 for FA research! This amount is equivalent to the support needed to fund an investigator at an FA research lab bench for two years. We invite you to join The Pathway campaign and donate $10 a month or more towards FA research. Our aim is to grow the program by 25 supporters this month. Click here to learn more information and join The Pathway.


Jennifer Farmer,
FARA Chief Executive Officer

Other topics in our June Monthly update:
  • Pharma News
  • Recently Funded Grants
  • Cure FA Soirée
  • Minutes of Science
  • Congratulations, Michael Crawley!
    2022 Myra Kraft Community MVP Award Recipient
  • Save the Date - September 24- 25, 2022! FA Symposium
  • Open & Enrolling Studies

Read the Full Monthly Update

Join us for an Informational Webinar: Gene Therapy for the Heart in FA- June 27, 2022

Save The Date Image
Please join FARA, LEXEO Therapeutics, and Weill-Cornell Medical College for an informational webinar on Gene Therapy for the Heart in FA on June 27th at 4pm EST. The presenters will be Dr. Jay Barth, Chief Medical Officer, LEXEO Therapeutics and Dr. Ronald Crystal, Weill-Cornell Medical College; and the session will be moderated by FARA.

This webinar will provide information on an investigational gene therapy for the treatment of the cardiac manifestations of FA, including details on two clinical trials. There will be time for Q&A. However, we encourage submission of questions in advance with your registration for the event. Register or Submit your questions below. After registering, you will receive a confirmation email with the link to join us.

Anyone considering participating in a clinical trial should discuss the matter with his or her physician. FARA does not endorse or recommend any particular studies.

Register for the Webinar

Submit Questions


FA Researcher Monthly Update - June 2022

Research news banner image

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

  • ICAR 2022 – Deadline for abstract submission is June 13th!
  • Meet the Community
  • FA Research Flash Talk Series
  • Pharma News
  • Recent FARA funded FA Publications
  • Recent FA Publications
  • FARA Newly Awarded Research Grants
  • The FARA Forum Webinars
  • Grant Opportunities
  • Meetings of Interest to the FA Community
  • Job Posting

Read the full FA Community Research News

FARA Job Posting: Director of Clinical Research

FARA is seeking a full time Director of Clinical Research.

Position: Director of Clinical Research Status: Full Time Position
Reports to: Chief Executive Officer Supervisory Responsibility: n/a
Location: Downingtown, PA Office or remote with appropriate experience Must be willing to travel (domestic and international) and work weekends.
Join a high energy, committed team of professionals dedicated to advancing research leading to treatments for Friedreich Ataxia. Establish a global clinical research consortium that promotes collaboration, patient data contributions, and clinical trials and drives efficiency and urgency in drug development for FA.

Please click HERE for more information.

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