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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:


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.

Chrysanthi Zouva

brittany sommerfield Hi! My name is Chrysanthi, I am 37 years old and I come from Greece.

I was diagnosed with FA when I was 20, but I have been experiencing symptoms, such as instability, since I was 17. The diagnosis came relatively quick for me, but it was not an easy process. Between my anxiety about school at the time, and not showing any specific symptoms, it was hard to identify and diagnose the disease. After the diagnosis came, dealing with the disease itself was difficult. I started taking care of my physical health early on and I think that has helped me a lot because for many years I could walk and did not have to use a wheelchair. While I am currently using a wheelchair, I still make sure to stay active by doing hydrotherapy, physiotherapy, and I also love to exercise using a handbike. I believe exercise is key to all neuromuscular diseases and people’s general well-being as well.

María Mercedes Sebastián

brittany sommerfield My name is María Mercedes Sebastián , I’m 32 years old. I was born in Ecuador, but my parents and I are living in Madrid, Spain now. I studied administration and I also have an MBA, but actually I’m not working because working demands a lot of energy that unfortunately I don’t have at the moment.

I was diagnosed with FA in Madrid and everything was confirmed by genetic tests in 2008, so I’ve been living with FA for 13 years. I started using wheelchair when I was 25. I started to use it only in difficult situations, but as time went by I needed to use it permanently; I can’t imagine my life without my wheelchair.

Corinne Oehen

corinne oehen My name is Cori, I‘m 35, and I live in the German part of Switzerland.

I was diagnosed when I was 16. My youngest brother had early symptoms, so they diagnosed him when he was 10. The doctors told to my parents it’s hereditary, so they tested my DNA too. I started to use a wheelchair 13 years ago. Twice a week I do physiotherapy, with home work-outs and Yoga too, I try to stay fit.

With the diagnosis of FA, my life changed a lot. I learned to accept and to enjoy life with ups and downs. With FA, life is not over. Any of us humans, have a backpack to carry; so keep carrying and smiling. I love traveling, surfing, cooking and yoga.

AJ Perez

brittany sommerfield Hello, I am AJ Perez. I am 33 years old and from Austin, Texas.

I was diagnosed with FA just recently, last March to be exact. Although the diagnosis was recent, I have been living with the symptoms for about 10 years. During that time, it was a frustrating, annoying, doubtful time going to unaware doctors. It's not their fault it’s a rare genetic disease. It was so frustrating being told by Dr.'s test after test that I was fine, but knowing myself something was wrong, and having everyone else look at me as though I was drunk due to my speech, and lack of coordination. That is one of the known and common experiences that connect and bring us together. p>


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