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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.

Virtual Hill Day Celebration – Sep 21st @ 7pm EDT

United Against Hill Day Image 2022
Join Us for a Celebration!

At the conclusion of United Against Ataxia Hill Day, please join us for a celebration of your efforts and to recognize the Ataxia Research Champions!

Tune in September 21st at 7:00 PM EDT
for a United Against Ataxia Hill Day Celebration

The broadcast will premiere on the National Ataxia Foundation's (NAF) Facebook page and YouTube Channel. This 25 minute program will be virtual.

Your advocacy directly impacts the pace of research.
Learn about and celebrate your impact!

Questions? Please contact: Lori Shogren at or Brigid Brennan at

FARA Informational Webinar with Larimar Therapeutics

Join us for an Informational Webinar
with Larimar Therapeutics
on their CTI-1601 Program in FA

FARA and Larimar Therapeutics will host an informational webinar on the CTI-1601 Program in FA, on Thursday, September 22, 2022 at 7pm (ET), for the FA patient community. The presenter will be Larimar Chief Executive Officer, Dr. Carole Ben-Maimon; and the Q&A will be moderated by FARA CEO, Jen Farmer and Director of Patient Engagement, Layne Rodden.

This webinar will provide information on the CTI-1601 program including a review of the Phase I trial data, the recent partial lift of the FDA clinical hold, and plans for a Phase 2 dose exploration trial of CTI-1601 in Friedreich's ataxia patients. To read the recent press release from Larimar Therapeutics, click HERE. There will be time for Q&A. However, we encourage submission of questions in advance with your registration for the event. Register HERE for the webinar. Submit your questions HERE. After registering, you will receive a confirmation email with the link to join us.

Register for the Sessions

Submit Questions

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.

Monthly Update - September 2022

Dear friends,

International Ataxia Awareness Day is quickly approaching on September 25th, and there are many ways to get involved throughout the Fall. This newsletter will highlight some of the upcoming events such as United Against Ataxia Hill Day, the FARA and CHOP Symposium, the Energy Ball, rideATAXIA, as well as new clinical studies and more. We look forward to seeing you online or in-person for one or several of these gatherings.


Jennifer Farmer,
FARA Chief Executive Officer

Other topics in our September Monthly update:
  • Pharma News
  • Recently Funded Grants
  • United Against Ataxia Hill Day
  • NIH Eye on the Future Video Contest
  • FARA Store
  • rideATAXIA Philly
  • FARA & CHOP Symposium
  • The FARA Energy Ball
  • rideATAXIA Dallas
  • New Clinical Studies/Trials
  • Open & Enrolling Studies

Read the Full Monthly Update

FA Monthly Research Update

Research news banner image

This month's Research Update covers the following topics:

  • ICAR 2022 – Register now to avoid the late fee
  • Pharma News
  • 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 Monthly Research Update

Informational Webinar on Omav Headlines

Understanding the Latest
Headlines on Omav

Review of Data & Developments

Informational Webinar - August 30, 2022

Reata Pharmaceuticals recently completed a mid-cycle communication meeting with the Food and Drug Administration (FDA) where feedback arising from the current review of the New Drug Application (NDA) for Omaveloxolone for the treatment of Friedreich’s ataxia was provided to Reata. At this meeting, the FDA agreed that Reata could submit updated supportive data to the existing NDA. With this data now submitted, the FDA has advised that they will require an extension to appropriately consider the updated application. The review is now due to conclude on February 28, 2023.

FARA CEO, Jen Farmer and study Principal Investigator, Dr. David Lynch hosted an informational webinar on these new developments, covering these topics:
  • The significance of the three new datasets submitted by Reata to FDA
  • How FACOMS natural history study data played a role in this submission
  • Why the new data was submitted now and why the FDA requires an extension on their review
  • FARA's response to these developments

View the Webinar Recording

Click the links below to read the most recent press releases from Reata Pharmaceuticals.

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