Bill Nye is back in his lab with NAF and Biogen—breaking down the science of Friedreich Ataxia in a new video series. WATCH NOW
Submitted by Theresa Nelson, Executive Director at Ataxia Connection It is an exciting opportunity for our organization, Ataxia Connection, to travel and attend the Annual Ataxia Conference (AAC) as a group and network with other individuals and care partners in the Ataxia community across the U.S., along with meeting the Read More…
Submitted by Mark Holdenried Attending the 2025 Annual Ataxia Conference (AAC) in Las Vegas was a meaningful and energizing experience. From the travel experience to sessions, each moment added to the feeling that we truly are not alone in this journey. Meaningful Moments and New Connections Before even boarding the Read More…
My challenge and journey with Ataxia I was born youngest in a family of 11. From teen I witnessed my father (who was about 50 at the time), physical conditions deteriorated and stopped work. My mother even thought he was lazy and wanted to just stay home. Better understanding his Read More…
Why I Wrote a Children’s Book to Explain Ataxia Well, it turns out your brain’s cerebellum is super important… A couple of years ago I found out that mine was shrinking. My sister and I both have a rare form of genetic Ataxia called SCAR8, ARCA1, SYNE1 or Ataxia of Read More…
I am the mother of a child with SCA (type 14). My daughter who is now 12 had her first symptom when she was 5. She had a vision through her school and had failed it. What was so unusual about that was she had her annual exam with her Read More…
My Ataxia journey started some years ago. Even before I was diagnosed, my wife commented that I walked like “Tipsy Mc Staggers”, and I had balance issues that I attributed to a ‘wonky’ knee. I spent about 50 years working in the education field as a teacher, assistant principal, math Read More…
My name is Julie Guillot, and my son, John, has Ataxia. John’s journey began on January 19, 1998, just a few weeks after he was born. As a newborn, he was admitted to the hospital with RSV and had routine blood work performed. The blood work showed that his platelet counts were low, Read More…
My name is Terrence A Reed Jr, retired U.S. Army. I also served in four combat zones (1 Afghanistan, 3 Iraq). Now that I think back, I think I first noticed while still serving on active duty on Schofield barracks in Hawaii. We did a lot of physical training, and Read More…
After completing my residency training in Neurology in Italy, I pursued a PhD in Clinical Neuroscience, which solidified my commitment to both clinical practice and research in the field of movement disorders. Throughout this period, my work focused on three key areas: (a) the clinical phenomenology and genetic underpinnings of Read More…
I have a genetic disorder called Batten Disease-CLN2. Doctors don’t know why I didn’t start showing symptoms until I was in my forties- this usually only happens to very young children. There is no cure but there is a treatment for the type of Batten Disease I have. I had Read More…
