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NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA)
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Jonathan Zilles

Jonathan Zilles

I’m Jonathan Zilles. I was diagnosed with Friedreich’s Ataxia when I was 11 years old. Life as a kid with
Friedreich’s was pretty normal, but I fell down a lot. My symptoms started early and included hand-eye coordination issues.
Despite FA, I was fortunate enough to graduate both high school and college, and even live on my own for a few years. Friedreich’s has since taken away my independence. I need 24-hour support and care, so I live with
my parents. I use a service dog to help me—although I recently lost Phelps to a heart attack. Phelps was a great friend and helped make life more enjoyable.
I like listening to music, watching college football (Go Auburn!) and the San Antonio Spurs. I’m 38 now and have 2 older sisters that are both carriers of the disease. If I were to give advice to someone who is newly diagnosed with Ataxia, it would be to find a good neurologist, learn as much as you can, and seek out other families dealing with Ataxia. My story is just one of 150,000. Please donate today and help us
find a cure!
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