Friedreich's Ataxia Research Alliance

FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

FARA Ambassador Program Mission Statement:

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

Dirk Desserault

Elizabeth Bowen Hi everyone! My name is Dirk Desserault and I am currently 35 years old.

I have always tried to live my life seeing the glass as half full. Even being diagnosed with Friedreich's ataxia at age 14 I simply viewed it as a hurdle, not a death sentence. Growing up in a fairly rural area meant that any exposure to other ataxians was a very rare occurrence. So my well-intentioned mom took to the internet trying to find someone that I could relate to, and help me understand my new life. To our amazement she found someone not much older than I was who only lived 20 minutes away.

Shelby Wright

My name is Shelby Wright and I’m 26 years old.

I was diagnosed with FA when I was 12. I have been occupied with many things since then; including earning my Bachelor’s in Political Science. I am currently a student at the University of Missouri Law School, and getting a Graduate Degree at Mizzou’s Journalism School.

I’m probably thinking about politics, reminiscing about where I’ve traveled, or dreaming about the places I haven’t been yet. But I could be in the gym strengthening my lats while my mind is out there.

A piece of my soul will always be in the hills of Southern Missouri, but my boots might not be. Home is wherever I roam.

Brian

Brian Hey! My name is Brian, I am 36, and from Long Island, NY (Lets go Yankees!).

I was diagnosed in 2020, after many years and almost as many doctors. Looking back, my symptoms started somewhere in my late teens. I was very athletic at that time until I tore my ACL. I never fully recovered and never got back on a field. It hurt, and for a long time I blamed myself. I ended up having 2 more surgeries still thinking and hoping it was a structural problem. And boy, looking back on it, I see how my mind can rationalize things. But slowly the limp became more pronounced, balance became worse, hand eye coordination deteriorated and I knew something else was going on. When I finally received my diagnosis, I took it mostly in stride in part because, #1 I don’t think I understood the gravity of this disease at the time, #2 I had been living with (managing) the symptoms for over a decade, and #3 I kept reminding myself I was the same person as the day before my diagnosis, only now I know more and can be more proactive against it.

Megan Leeper

Megan Hello everyone, my name is Megan and I have had FA for almost 5 years. I began experiencing mild symptoms 4 years before I was diagnosed but I always thought I was just clumsy. After I graduated from high school my symptoms became worse and I was diagnosed at 19. I currently live with my parents and dog in Burleson, TX, and am working on finishing a degree in Forensic Psychology from SNHU, graduating soon hopefully.

Britanie Sutton

britanie sutton Hey y'all! My name is Britanie. I am 29 years old.

I was born in Alabama and currently live in Tennessee. I live with my two children, Laci and Landon, and my husband, Michael. I stay at home with my kids and enjoy experiencing daily life with them! I get to be the involved mom, the girl scout mom, and most importantly the mom that can teach an understanding to my children about disabled people. Before I made the decision to stay home, I was a supervisor at my local CVS pharmacy for seven years.I now use a rollator full time around the house and a wheelchair for outside the house.