From Riding a Harley Davidson to a Catrike -Ataxia is not who I am, it is what I have. I was diagnosed with Hereditary Friedreich Ataxia (FDRA) in August 1998. I had neurological issues for a few years before being tested (e.g. gait or the airplane walk, slurred speech, balance, Read More…

It is a “Funny thing,” now looking back at what caused me to seek a diagnosis. Yeah, spending some quality time in jail caused me to get motivated to find some answers. It is really plain to see God’s powerful, loving, and guiding hand in the diagnosis process. Even the Read More…

My name is Jane Jaffe. My daughter, Lisa, was diagnosed with Ataxia in July 2002. We were shocked when the neurologist told us our gorgeous, smart, funny, terrific daughter had a part of her brain shrinking. At the time, Lisa was a teacher. She holds a Master’s Degree in Education. Read More…

My name is Stephanie Leonard, and I have two sons, Ames and Asher. When they were babies, we started noticing they were delayed with milestones and didn’t take their first steps until after their second birthday. After countless hours of research, physical therapy, doctor appointments, MRIs, and genetic testing we Read More…

My name is Linda Snider, MD, and I am 45 years old. I started experiencing symptoms in my late 30s — walking off balance, slurring my words, and tripping a lot. I was diagnosed with SCA type 1. I became a doctor because my father had Ataxia and I became Read More…

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 Read More…

My name is Ed Schwartz. I’m co – chairman of “The Western Pennsylvania Ataxia Support Group of the National Ataxia Foundation (NAF). Ataxia is the biggest challenge I have ever had to face in my life. About twenty three years ago I began to fall down in the dark. Then Read More…

I wanted to help the NAF and spread awareness about Ataxia. One way I could help support the NAF and also bring about awareness was by having fundraisers. I have two fundraisers per year.  Introducing the NAF to my friends and acquaintances or by telling them to go directly to Read More…