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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.

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.

Freda Butler-Bohn

FredaHi, my name is Freda Butler-Bohn. I'm 52, and I'm from Pauline SC and live in Arden, NC.

I have Friedreich's Ataxia. I was diagnosed around age 32 when I was going to have my 3rd child. I have three children now, two boys and one girl. Aged 20, 23, and 30 years old plus I have two grandkids. For pets, I have three cats and a bird. I went to college and am a Registered Nurse. I worked up till 2012 when I first became an RN I wanted to be a Missionary midwife, but I can't do that so I may go back to get BSN so I can work somewhere as a nurse sitting down.

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.

Sophia Sieber-Davis

SophiaMy name is Sophia. I'm a 29-year-old artist living in Northern California with my partner and our two young sons.

I was diagnosed with Friedreich's Ataxia at 13, though I noticed I couldn't keep up with the physical activities of my peers early in life. At 14, having just entered high school and the most awkward time of life, I struggled to maintain focus and calm in navigating through crowded hallways. I remember how much mental power it took to keep my gait steady. This was the point when I convinced my best friend to get her nose pierced with me; I wanted something I could concentrate on while I walked. No, it didn't make me cross-eyed- just being able to see its faint sparkle in front of my face gave me confidence and a sense of safety. It still does.

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