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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.

Monthly Update - December 2021

Dear friends,

Thanks to your incredible generosity, we are on track to fund over $8M in research this year. This work spans across our grant program, the Collaborative Clinical Research Network, FARA directed research like the TRACK-FA study, and institutional support of the FA Center of Excellence at Children's Hospital of Philadelphia and the FA Accelerator Program at the Broad Institute. These are projects that will provide new insights into FA and bring new therapies to the treatment pipeline. You brought the resources to fund these critical projects by cycling at rideATAXIA, hosting your own grassroots events, attending the Energy Ball, and giving to our most recent #GiftofResearch campaign (which has thus far earned over $195,000 of the $200,000 matching pledge!). I am so honored to be a part of a community that rallies together to make research progress a reality. Wishing you a happy holiday season and a new year with continued progress towards treatments and a cure for FA.

Our December Monthly Update also provides information on the following topics:

  • Pharma News
  • FARA Funded Research
  • Broad Institute Friedreich's Ataxia Accelerator
  • FARA Ambassador, Shandra Trantham featured in People Magazine
  • Minutes of Science
  • Open & Enrolling Studies
  • The Pathway

Read the Full Monthly Update

December Monthly Update for Researchers

New deadlines for the FARA grant program

LOIs for the Keith Michael Andrus Cardiac Award, the Kyle Bryant Translational Research Award, and the Bronya J. Keats International Research Collaboration Award: January 15

Award for Innovative Mindset applications: February 1

LOIs for General Grants, Postdoctoral Fellowships, and Postdoctoral Awards: February 15 and August 15.

Please see more information, including grant funding start dates for each cycle here.

All investigators interested in FA-related research are invited to submit an LOI through our submission portal. The proposed research must fall within FARA's Grant Program Priorities and more information on how to apply for a FARA grant can be found here.


Read the full December Monthly Update for Researchers

Giving Tuesday is November 30th

#GivingTuesday, a global day of giving. On November 30th and throughout the holiday season, consider giving a gift to FARA as a #GiftofResearch to the entire FA Community. All FARA funded grants serve to advance our knowledge of FA, promote drug development, and offer new research resources to the community while also ensuring that existing clinical trials continue to provide beneficial data and facilitate future studies. This Giving Tuesday and throughout the month of December, you can double your impact by helping FARA earn a $200,000 matching gift!

Read below to learn more about the story behind the match.

Give the Gift
of Research
Create a

My son Greyson, who is now 15, has Friedreich’s Ataxia. On October 16th of this year, my friends hosted a fundraiser for our family and FARA. It was a fun Fall Festival at my friend’s home with food trucks, live music, hay bales and fires, gourds and pumpkins, desserts, drinks and an auction.

On that night, we shared a very special moment with the nearly 200 people in attendance. I want to invite you all into that moment with us. I am sure you will see yourselves both reflected in and held by what you see and hear.

Before this clip was recorded, I leaned past my feelings of vulnerability into the magic of what was happening and made my way to the microphone. As I turned to speak, I saw everyone gathered in what formed a circle around me. The sun had just set so I couldn’t see faces anymore, just the silhouette of those that had shown up for us against a perfect fall sky. In that moment together there were no boundaries between us and no boundaries to what we might accomplish.

I did not know this was being recorded, but I am glad it was so that you can also witness the moment if you would like.

“This is what support looks like. This is what being held by your community looks like. This is what authentic and genuine love looks like.”

After our fundraiser, the Burgett family and the Kokosing Group of companies pledged to donate up to 100K in matching funds. The Kokosing Group of companies is a 4th generation, family-owned construction contractor headquartered in Ohio.

Marsha Rinehart, a member of the Burgett family, then spear-headed a campaign to raise funds igniting a chain of pledges from co-workers, family, friends and local businesses that would increase the match up to 200K for contributions made to FARA on Giving Tuesday and for the Gift of Research campaign throughout December.

Share this with your people. The ones who show up for you and let’s see what we can do together!

It’s time to make a miracle happen.
-Marcy K Freed

November Monthly Update for Researchers

RFP Pharmacodynamic Biomarker Development:
LOI submission deadline is December 1, 2021

FARA is issuing a request for proposal (RFP) to support clinical drug development programs in Friedreich’s ataxia (FRDA) by promoting the discovery of technologies to measure frataxin or surrogates of frataxin in inaccessible and disease relevant tissues.
This RFP supports the discovery and validation of non-invasive and quantitative methodologies to measure the following in FRDA affected tissues (brain, spinal cord or heart):

  • Frataxin protein levels
  • Biochemical activities dependent on/downstream of frataxin function that can be surrogates of frataxin in inaccessible tissues.


Read the full November Monthly Update for Researchers

FARA Advocacy Newsletter - October/November 2021

250 Advocates + 100 Congressional Meetings = SUCCESS!

Over 250 people registered for the third United Against Ataxia Hill Day, resulting in 100 Congressional meetings covering 44 states! The time and attention that each and every advocate put into making this event a success was apparent from all the positive feedback we received.

"I did not know anything about Ataxia before today, thank you for sharing your story," was a comment we heard often. By combining our voices, we raised awareness and educated our legislators about our journey of being diagnosed and living with ataxia, and our search for treatments!

It was particularly exciting to highlight that our Hill Day followed National Ataxia Awareness Day! This accomplishment was a clear demonstration of the commitment the ataxia community has to elevate the conversation. FARA and NAF are very grateful for Senators Christopher Murphy (D-CT) and Cindy Hyde-Smith (R-MI) for co-sponsoring a Resolution declaring September 25, 2021, National Ataxia Awareness Day. (S.Res. 339).
Read the Full Advocacy Newsletter
Page 10 of 109



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