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).
SIGN THE PETITION
Ten years ago this month, my husband Joe was diagnosed with hereditary Spinocerebellar Ataxia, SCA2. That marked the day our lives changed and would never again be the same. Since then, our youngest daughter tested positive for SCA2 as well. We had time to process the diagnosis and vowed not Read More…
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 Read More…
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 Read More…
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. Read More…
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 Read More…
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 Read More…
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 Read More…
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…
