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FARAFARA Cure FA

Jacob 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.

Describe your transition from walking to walker/wheelchair. At 24 I started using a cane, at 30 I switched to a wheelchair.There was alot of falling. It is much safer in the chair. What do you like to do to stay active and what type of exercises do you do to stay strong? I ride a recumbent trike 10+k a week.

Do you use any tech aides? if so, what works or hasn't worked for you? The trike would not work for me without clip-less shoes, and pedal extenders by Kneesavers.

What's your most comfortable pair of shoes to wear? Around the house I wear skateboard shoes. When I go out I wear my hand made Steve Madden wingtip boots.

Do you have a diet plan you like to follow? Why? No soda. And no fast food.

Do you participate in any recreational sports? I play a lot of guitar. Does that count? What is one way living with FA has POSITIVELY affected your life? FA made me change gears and take what I know about the music industry and focus on recording bands instead of playing live. Record producing has become my passion.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? Don't wait as long as I did to reach out to the community. You are not alone!

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? Reunion tour?

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? "I would walk through the fires that burn in the path of my dreams."

 

 


About the Author

The FARA Ambassador Program

The 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 a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
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.

 

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