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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: info@cureFA.org.

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>

Libby Schwers

brittany sommerfield Hello! My name is Libby Schwers and I am 23 years old. I live in Des Moines, Iowa and work as a graphic designer at a smaller agency.

I was diagnosed with FA when I was 22, but I've been experiencing symptoms of FA for about five years now. The diagnosis was a hard pill to swallow, but it has helped me to become the strong, courageous woman I am today.

Jack Dewitt

jack-dewitt-2 My name is Jack Dewitt. I am 21 years old, and I was diagnosed with Friedreich’s Ataxia at age 10.

I currently live in Michigan and am going to college at the moment, majoring in both communications and theater. I am also a firearms enthusiast and 2nd Amendment advocate. This led to me founding and building my very own business called Cards Custom Arms. My business manufactures a variety of handgun holsters and magazine pouches. We also provide custom cherokee jobs for anything from pistols to rifles to motorcycles. One of my passions is hunting in which I have been lucky enough to take both elk and deer.

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