FARA Ambassador

04/05/2024

Ataxia fundraiser in Gainsville March 2024.

02/10/2023

How are you doing buddy??

03/25/2022

Becky,Tom,Riley

03/03/2022

I have a debilitating, life-shortening, degenerative neuro-muscular disorder called Friedreich’s ataxia (FA). About one in 50,000 people in the United States have Friedreich's ataxia. To learn more about FA and/or make a donation to help us
find a cure visit:
[email protected]
Tom Trovinger
FARA Ambassadorr
1212 Sunset Circle Daytona Beach Fl 32117
United Stated

10/15/2021

If 747s can carry the space shuttle, then I call bu****it on overweight baggage fees

09/26/2021

Do u know what ataxia is? Sept. 25th is international ataxia awareness day,do folks with ataxia a huge favor and tell 1 person who doesn't know about ataxia.you may be the 1 who inspires someone to find a cure.To learn about FA goto www.curefa.org

Friedreich's Ataxia Research Alliance

05/27/2021

rideATAXIA Chicago is back and in person! Join us Sunday, July 11th at Channahon Central Park in Channahon, IL. If you can't make it, the virtual campaign will start on July 1st and will lead up to ride day.

You can still register for the in-person ride (all participants, volunteers, and spectators must register). There will be 12-mile and 4-mile ride options as well as a 1-mile walk. We hope to see you there!

Register today by visiting:

Join us for rideATAXIA Chicago as we raise funds and awareness for Friedreich's ataxia research!

02/10/2021

I get terrified and a little emotional every time I close word and it asks me if I want to save changes to my 12 page document that I swear I've made no changes to

01/09/2021

10,000 Signatures and counting! Let's keep the momentum going!

Thank you to everyone who has already raised awareness of and signed on to the letter FARA prepared to send to the Food and Drug Administration & Reata Pharmaceuticals: Allow Individuals with Friedreich Ataxia Access to Omaveloxolone. This letter requests Reata to submit a New Drug Application (NDA) on an urgent basis and FDA to exercise the flexibility granted by law and contained in FDA guidance in considering approval of an NDA for Omaveloxolone in FA based on the existing evidence from clinical trials.

If you have not signed onto the letter, you can do so up until January 20th. The entire FA community (individuals with FA, family, friends, caregivers, supporters, other rare disease advocates) is invited to sign on and support. To read the letter, sign on, and learn more, visit:

Friedreich's Ataxia Research Alliance

01/09/2021

10,000 Signatures and counting! Let's keep the momentum going!

Thank you to everyone who has already raised awareness of and signed on to the letter FARA prepared to send to the Food and Drug Administration & Reata Pharmaceuticals: Allow Individuals with Friedreich Ataxia Access to Omaveloxolone. This letter requests Reata to submit a New Drug Application (NDA) on an urgent basis and FDA to exercise the flexibility granted by law and contained in FDA guidance in considering approval of an NDA for Omaveloxolone in FA based on the existing evidence from clinical trials.

If you have not signed onto the letter, you can do so up until January 20th. The entire FA community (individuals with FA, family, friends, caregivers, supporters, other rare disease advocates) is invited to sign on and support. To read the letter, sign on, and learn more, visit: curefa.org/advocacy