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:
Info@curefa.org
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: curefa.org/advocacy

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

12/28/2020

When I was growing up I never knew what I wanted to be, now that I’m older I know that it’s younger.

10/28/2020

When it comes to returning emails, I only have two speeds: Within five seconds or within five months.

10/12/2020

Awesome

09/29/2020

September 25th is International Ataxia Awareness Day. I have Friedreich's Ataxia, the most common type of this rare disease, but there are many different forms. Symptoms are basically the same, though.

This diagram doesn't even show all of the complications that need to be handled on a daily basis. It will basically work against your entire body little by little, while leaving cognitive abilities untouched, allowing the person to come to terms with that. There is also no current treatment and it gets worse and worse.

Have a great day 😆

08/31/2020

BIlly & Tom

05/06/2020

Walked in the pool yesterday! When I did it I came to two conclusions, I had forgotten what it felt like to be 6’,and that being in a wheelchair makes You a terrible judge of height. I realized this When it dawned on me that my therapist, whom I've worked with for 5 months was ridiculously short.