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FARAFARA Cure FA

Jonathan Zilles

JonZilles1Name: Jonathan Zilles

Age: 37 on December 31st!

Where do you call home? Atlanta, GA

Education: BA in psychology from Auburn University

How long have you known you are living with FA? I was diagnosed at age 11. My parents noticed I had a funny gait so we went to several neurologists. They were not sure if it was FA or another form of ataxia, as the FA gene had not been discovered yet in 1990.

Are there any others with FA in your family? No, but my family took part in a research study leading up to the FRDA gene discovery. Genetic testing results showed both of my sisters are carriers. 

 

Describe your transition from walking to a wheelchair. My transition from walking to using a wheelchair was different from most cases of ataxia. When I was 14, I was in a car accident with my sister. She was turning left and a car came around the curb speeding and hit the passenger side. My sister was not injured, but I crushed my femur in 3 places and broke my hip, cracked my pelvis and lacerated my liver. When the doctor first looked at my liver, he distributed it as "looking like an explosion." Once I had my liver repaired, I had surgery to repair my broken leg. I was in a spica cast for 3 months and on bed rest. After I got out of the cast, I began to use crutches. I was encouraged to walk, but I found it quicker to swing through. For 3 years, I continued to use the crutches, swinging through them. The start of my senior year of high school, the school said they did not want any liability on their hands and wanted me to start using a wheelchair full-time. Once I got into a wheelchair, I found life to be so much more enjoyable. I was able to carry on conversations with my friends while in transport, no longer having to worry about where to put my feet or crutch. JonZilles2

What do you like to do to stay active and what type of exercises work for you to stay strong? I'm currently doing physical and occupational therapy twice a week. I enjoy lifting weights and playing with my service dog Phelps.

Do you have any hobbies or special interests? I really enjoy listening to music.

What is a good trick to make daily life easier? Stay positive to stay happy. Find a passion, stick with it and "don't worry; be happy."

When FA gets you down, what do you do to feel better? I just have to relax and go to "my happy place," find my inner hippie.

What is one way living with FA has POSITIVELY affected your life? One positive thing is being able to spread my knowledge by partaking in interviews like this.

What is a favorite motivational quote of yours? From a Jerry Garcia/ Robert Hunter song, "The grass ain't greener, the wine ain't cheaper either side of the hill ".

What is the best advice YOU could give to a person who has been newly diagnosed with FA? One thing I did when I started showing symptoms of FA was being in denial to all my friends. But I think it is best to be honest. If someone asks you why are you walking funny, just be honest with them instead of being embarrassed.

"I have FA but FA doesn't have me." What does this statement mean to you? FA doesn't stop me from doing what I want to do. I just keep on trucking.

Tell us a little more about you: "What a long, strange trip it's been".

We are STRONGER TOGETHER! Find a new Meet the Community every Monday.

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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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