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National Ataxia Foundation

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Month: May 2019

Ian Bouras

Ian Bouras

My name is Ian C. Bouras. I love to play the guitar and produce music. I first noticed symptoms when I was struggling to play something on the guitar. I went to go see a doctor about my coordination and was diagnosed with Ataxia. Strangely, life before Ataxia felt very guided, as I always felt Read More…


Marc Alessi

I think the first time I realized something was different about my dad was when he was forced to quit his job. I was 6 years old. Over the next few years, it became clear that some sort of illness was impacting my father’s life, later I found it to be called spinocerebellar ataxia. He Read More…


Michelle DeCiantis

Michelle DeCiantis

Ataxia came to me as a question. More than 15 years ago and each year that passes more questions are added to my story. I have been diagnosed with SCA unknown type with an overlapping of upper motor neuron disease unknown. I’ve seen doctors from UCLA to University of Michigan. I work hard to get Read More…


Shannon Dunphy Lazo

Shannon Dunphy Lazo

My journey began many moons ago. Happily, my ataxia has progressed slowly, over 20 years. For a while, I could still walk unaided. Then I eventually … But I digress. Most of you know the common symptoms of ataxia, so I won’t bore you with too many details. I have been grappling with who I Read More…


Louise Estabrook

Louise Estabrook

The National Ataxia Foundation serves as a constant reminder for so many that we are not alone on this journey. The network and support provided by the NAF have enabled my family and me to find strength through this battle knowing that any success we achieve is not solely for our benefit but for the 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 Read More…


Mary Fuchs

Mary Fuchs

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, weak muscles.) In 1997, a 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 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. At the time, Lisa was a teacher. She holds a Master’s Degree in Education. I remember saying “there is 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, MRIs, and genetic testing we finally received our answer as Read More…


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