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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.

FARA has two tickets to the 2022 Super Bowl for charitable auction

This is your chance to go to Super Bowl LVI and support research for Friedreich's ataxia. FARA has two tickets to the 2022 Super Bowl for charitable auction. Super Bowl LVI will take place on Sunday, February 13 at the SoFi Stadium in Inglewood, CA. The tickets are for seats in Sec 514, Row 14, Seat 23-24. (Airfare and lodging are not included.) The starting bid is $5,500. The bidding increments will increase by $250. The auction is now open and will close at 5:00pm (EST) on Tuesday, February 1, 2022. To place a bid:

  1. Visit
  2. Enter your mobile number or email.
  3. Enter your name, address, and credit card. Click "Submit."
  4. A text will be sent to your phone (or email) with a link to your portal to bid and a one-time login code. Tap the link and enter the code.
  5. Enter your auction bid.
  6. Don't get out bid in the final minutes of the auction. Let the bidding software work for you. Set your Max Bid on the tickets. The software will bid against other bidders for you and notify you when you've been outbid.

Note: Tickets will be transferred electronically to the winning bidder via the NFL Ticketholder App (run through Ticketmaster). As per National Football League rules, these Super Bowl tickets cannot be re-sold on any Internet site. Any tickets that have been re-sold via the Internet will be nullified and the corresponding charity organization no longer will be eligible to participate in future Super Bowl ticket fundraising opportunities.

Thank you for your support,

The FARA Team

View the E-Blast

FARA Job Posting: Administrative & Program Assistant

FARA is seeking a full time Administrative & Program Assistant.

Position: Administrative & Program Assistant Status: Full Time Position
Reports to: VP-Fundraising & Communications Supervisory Responsibility: No
Location: Downingtown, PA Office (Must be willing to work occasional weekends)
Join a high energy, committed team of professionals dedicated to supporting the advancement of research leading to treatments to improve quality of life for people living with Friedreich Ataxia (FA). FA is a rare, progressive neuromuscular disorder.

How to Apply: Email a cover letter and resume to Felicia DeRosa, Include "Administrative & Program Assistant" in the subject. Please include salary requirements.

Please click HERE for more information.

FARA Job Posting: Director of Patient Engagement

FARA is seeking a full time Director of Patient Engagement.

Position: Director of Patient Engagement Status: Full Time Position
Reports to: Chief Executive Officer Supervisory Responsibility: n/a
Location: Downingtown, PA Office Must be willing to travel and work weekends.
Join a high energy, committed team of professionals dedicated to supporting the advancement of research leading to treatments to improve a quality of life for people living with Friedreich Ataxia.

Please send a cover letter, resume with expression of interest to Jen Farmer,

Please click HERE for more information.

Advocacy Newsletter - December/January 2022

Happy New Year Advocates! 2021 ended with some amazing accomplishments thanks to your hard work. You may have been in legislative meetings, sent emails or simply shared your story with someone who did not know about ataxia. Every action, whether big or small, helps to raise awareness of FA and the resources needed to expedite treatments! Here are just a few highlights of what our community successfully undertook together:

74,000 people signed a petition asking the FDA and Reata Pharmaceutics to move forward on a New Drug Application (NDA) for Omaveloxolone - that NDA submission is expected to be filed in the first quarter of 2022.

Read the Full Advocacy Newsletter

January Monthly Update for Researchers

Deadlines for the FARA Grant Program are Approaching

LOIs for the Keith Michael Andrus (KMA) Cardiac Award, the Kyle Bryant (KB) Translational Research Award, and the Bronya J. Keats (BJK) Research Collaboration Award are due on January 15.

KMA Cardiac Award: Proposals focused on advancing understanding and/or treatment of the cardiac involvement in FA

KB Translational Research Award: Proposals focused on pre-clinical and clinical investigations that will advance treatments for FA, such as the identification of biomarkers, the development of tools and technologies that can be used for therapy development, the pre-clinical development and testing of potential therapeutics, or clinical studies of patient outcome measures.

KMA Cardiac Award:: Proposals focused on FA research that relies on the collaboration among investigators from at least two different Institutions. Special consideration will be given to proposals that bring new scientists to the FA community.

The Award for Innovative Mindset (AIM) application deadline is February 1.

The AIM supports the initial exploration of innovative, high-risk, high-gain, and potentially groundbreaking concepts in FA research. The presentation of preliminary and/or published data is encouraged, but not required. Note that this application does not require an LOI.

LOIs for General Grants, Postdoctoral Fellowships, and Postdoctoral Awards are due on February 15.

All investigators interested in FA-related research are invited to submit an LOI through our submission portal.


Read the full January Monthly Update for Researchers

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