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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.

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.

Molly Lawson

Molly LawsonHi there! My name is Molly. A little bit about me: I am 24 years old, and I just graduated with my Master’s degree in social work.

I was diagnosed with Friedreich’s Ataxia at 10 years old. FA is different for everyone, but I would say my progression is on the slower side compared to how quickly FA can progress. I was walking independently until the age of 18, when I started using a walker. At the age of 19, I used a wheelchair when I was out and about and a walker at home. When I was 21, I got a power chair to assist me to tackle long distances. At the time, I was living alone so I didn’t have much help for the day-to-day living.

Now that I am 24, I pretty much use my manual chair or my power chair to get by. I go to physical therapy twice a week, and there I walk with a walker, but walking by myself is dangerous. I also have a roommate now, but I still take care of daily living activities myself.

Sean Sommerville

Sean Hello my name is Sean Sommerville. I started experiencing symptoms of FA in high school while I was pursuing my dream of becoming a professional pilot. It wasn’t until after my freshman year in college that I decided I wanted to get my poor balance looked at by a professional. After a year of being poked and zapped more times than I can remember, I finally got diagnosed with FA.

The diagnosis was one of the hardest things to come to terms with in my life. While that diagnosis took me out of the cockpit, I still earned my commercial pilots license with single engine land, multi-engine land, and instrument ratings, as well as my certified flight instructors certificate all while experiencing symptoms of FA. I hope to one day return to the cockpit when a cure is reached, but in the meantime I will do all that I can to help my fellow FAers, raise awareness and money for this disease, and push my own limits biking, hiking, and facing the physical challenges that FA comes with to prove to myself that it won’t keep me down.

Jennifer Gasner

Jennifer GMy name is Jennifer Gasner. My FA diagnosis came nearly 30 years ago, at 17. It was genetically confirmed when the test became available. I have a BA in English and a Masters in Recreation. I grew up in Wisconsin. In 1999 I started using a wheelchair and began working with Independent Living Centers, (ILC's), an important resource for people with disabilities that I knew nothing about. That experience changed my perspective on disability so much. It led to being proud to be disabled, which I had been avoiding referring to myself as. I also felt comradery with my disabled friends, regardless of their diagnosis. I had only briefly met one other FA'er and felt very alone. It was great to discover commonalities and people who had experienced things I hadn't as FA progressed.

Elizabeth Bowen

Elizabeth BowenMy name is Elizabeth Bowen. I was born and raised on Hilton Head Island, South Carolina. I was first diagnosed in 1998 when I was 14. I am the oldest of four and no one else in my family has had FA.

When I was 12, I wanted to be on the basketball team at school, so I went to get a sports physical and the doctor told me that I had scoliosis. My parents then took me to a doctor to address the scoliosis and due to reports of my lifelong lack of coordination and balance, what they thought was simply clumsiness, and movements the doctor noticed that I made, lead the doctors to think that there might be something else wrong and ended up testing my DNA and finding out that I had Friedreich's Ataxia. I played soccer at the time and for a while after. I also did join the basketball team when I was 12, but I turned out to be terrible at being on the court, lol.

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