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.

Initially, I was diagnosed by symptoms only. Scoliosis, irregular gait, dishing of he hands, high arches of my feet, limited muscle reflex, clear CaT Scan, slow muscle response from an EMG. Genetic testing wasn't an option thirty years ago. A genetic test in 2004 did confirm that the diagnosis was correct. Twenty five years ago, I still couldn't even speak of FA without bursting into tears. I knew no one with the disorder, and hardly anyone had ever even heard of it. I did feel alone in my fight, and as a result, didn't much speak of it. As people do, I just went on... high school graduation, college, marriage, career as a Special Ed. College was the first time I used a wheelchair - actually a mobility scooter.