#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.

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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