ACE applications are now open through October 15. Join a national network committed to providing high-quality, comprehensive Ataxia care. Apply Now!
Thank you for 15 Years of Chuck and Duck! We guarantee you will get a kick out of this! For the15th year, Charlton Heights Elementary School participants came together to celebrate a former student with Ataxia, raise vital funds for the community, and have a blast doing it (check out those 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…
Guest Author: Ellie Martin We all have days where we just don’t feel like ourselves and any task can seem overwhelming or impossible to achieve. Mental health holds significance for overall well-being and quality of life. Navigating the challenges of life with Ataxia can be difficult. Therefore, prioritizing mental health 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…
Guest Author: Ellie Martin Traveling can be stressful, but it gives us the opportunity to go exploring. Whether it’s traveling to meet a friend, going on vacation, or traveling for work, it offers us to explore new cultures, meet people, and create memories. For individuals with Ataxia, traveling can present Read More…
In clinical research, scientists design studies to learn more about diseases and answer questions about new treatment options. Interventional clinical trials are used to better understand the safety and effectiveness of a new drug or medical device. Observational clinical trials help researchers learn more about how diseases develop over time 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…
