FARA Ambassador ProgramJacob Tompkins
This Meet the Community interview was originally published in November 2014. Jacob is now a participant in the
FARA Ambassador Program.
Name: Jacob Tompkins
Age: 34
Where do you call home? Tivoli, New York
Occupation/Employment: I own and operate a recording studio in NY.
Education: Red Hook High School, Bard College.
How long have you been living (or known you are living) with Friedreich's Ataxia? I began showing symptoms at 16. All of my teachers and peers would accuse me of being drunk every day. I was diagnosed when I was 22. A few days before I left for a nation wide tour with my band.
Do you have any known family history of Friedreich's Ataxia or similar symptoms? No.
I am Christin Haun from Broken Arrow, Oklahoma, part of the Tulsa metro area. I was diagnosed in 1985 as having Friedreich's Ataxia; at the age of fifteen. My current and primary job focus is maintaining my health. I have managed to keep my muscles working. I work at it, and I am blessed with an incredible familial support system and the gift of perseverance and joy. I am the only person in my family that has or had ever been diagnosed with FA. I was born an Okie and lived the first decade of my life as a nature-loving, tomboy. I am the eldest child, and bossy sister to one brother. At the age of twelve I began having issues with spine curvature, and wore a corrective back brace. Despite physician treatment, the curvature progressed. It was time for a different orthopedist. The new orthopedist recommended spinal fusion, and recognized something was amiss with my gait. He surmised a neuromuscular problem and referred me to a neurologist, who then confirmed the hypothesis. It was a very confusing, unhappy time, and the initial diagnosis was delivered as an emotionless death sentence. I had something that I couldn't pronounce that would put me in a wheelchair by the age of twenty, and by age thirty I'd be dead. Needless to say, I was traumatized, and then numb. I sought a second opinion. The diagnosis was the same; however, the second neurologist was a little more sensitive to a teenager and wanted to help me understand the disease and its process.
I am a native New-Englander – born, raised, and still proud to call the Ocean State (RI) my home. I’ve been afforded opportunities to travel nationally for work and internationally for pleasure, building memories with my family in places like Costa Rica, England, and South Africa. Despite my spark for adventure, I am more of a home-body; hiking/camping in the Spring, sailing in the Summer, apple picking in the Fall, and reading a good book by the fire in the Winter (as you can see I need all four seasons!). I enjoy nearly anything with family and close friends, especially cooking (and eating!), music, wrestling with our dogs and nearly anything outside. 
Lealan, In My Words By Katie Weir I have long looked up to Lealan’s athletic prowess. On a fall afternoon in the sixth grade, our PE class convened for the annual mile run. Lealan had a reputation for being one of the fastest runners in school and that day she did not disappoint. Lealan left me, and most of the other girls (and boys), in the dust. As we moved in to junior high, Lealan was the best at softball; with her speed she could turn a single into a standup double. I was lucky enough to have her as a tennis partner during those years. On the court she was swift, confident and graceful.
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