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Member Stories

DeCrescenzo Family

DeCrescenzo Family

“We had time to process the diagnosis and vowed not to let it change who we are or alter our daily lives. We found a neurologist who specializes in movement disorders and Ataxia. We also joined two support groups, one at Johns Hopkins Medical Center, and the other with the Chesapeake Chapter NAF. We met so many wonderful, inspiring people who were struggling with Ataxia but always stayed positive, which we admired. Our next step was to join the National Ataxia Foundation (NAF). We are so thankful we took that step. Our first encounter with NAF was attending the Annual Ataxia Conference (AAC) five years ago in San Antonio, TX. I must also admit that the first conference had a huge impact on our lives. It made us realize we are not alone and it gave us strength to move forward…. Since then, we have become advocates, started our own support group in Delaware, and organized many fundraisers for NAF.” Read More…


Lisa Cole

Lisa Cole and daughter

“I want to help the NAF and spread awareness about Ataxia. One way I could help support NAF and also bring about awareness was by having fundraisers. I have approximately 2 fundraisers per year. Introducing the NAF to my friends and acquaintances or by telling them to go directly to the website www.ataxia.org. In early 2013, I was on a treadmill for a stress test and almost fell. I blamed it on my knees. I went to an orthopedist, then to a neurologist. It was that neurologist that listened to me and sent me to Gainesville for a second opinion. I’m glad to get the correct diagnosis even though it is not a good one. I am starting a support group here on the east coast of Florida. I have ataxia, which won’t change, but I do want to help as many people that I can. The NAF is a great resource. I will definitely get as much information I can from the NAF. I want to help others plus it’s helping me.” Read More…


Ed Schwartz

Ed Schwartz

“My name is Ed Schwartz. I’m co – chairman of “The Western Pennsylvania Ataxia Support Group of the National Ataxia Foundation (NAF).
…” Read More…


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….” Read More…


Linda Snider, MD

Linda Snider, MD

“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 interested in medicine at a young age. …” Read More…


Leonard Family

Leonard Family

“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, …” Read More…


Lisa and Jane Jaffe

Lisa and Jane Jaffe

“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. …” Read More…


David Henry Jr.

David Henry

“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 real plain to see God’s powerful, loving
and guiding hand in the diagnoses process. Even the jail was ‘not really that bad’, but it did get my attention none the less….” Read More…


Mary Fuchs

Mary Fuchs

“For me, it is now about the “Fight for a Cure” and “Ataxia Awareness.” I found the Arizona Ataxia Support Group when we first moved to Arizona. I needed them and they needed me. They were experiencing “burn-out” and I had lots of energy, time, and new ideas to give. I am now co-coordinator since August 2010. I found the NAF, great support help and friends forever. After these 16 years of living with ataxia, my priorities are diet, exercise, support, education, encouragement, safety and FAITH which is huge for me. We cannot “stick our head in the sand” and hope it goes away. We all have gifts and talents. My message is “– USE THEM, it’s not about what you lost or can’t do, it’s about doing things differently.” Read More…


Ferris Family

Lindsay Ferris

“When Liesel was a baby I noticed her not meeting her milestones. Liesel’s Pediatrician watched her closely. At her 6-month checkup we made the decision to start therapy, but it took 2 months to get approval from insurance. Liesel started physical and occupational therapy at 8 months old. During that time, everyone believed she was just severely delayed. Liesel’s Pediatrician knew it was more than just being delayed…” Read More…


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