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Hereditary Ataxia and Genetic Testing: A Family Affair Original Member Story Published in Generations – Spring 2009 When I was given the diagnosis of “Spinocerebellar Ataxia, type unknown” in 2005 by a local neurologist (based on my neurological exam results, MRI test results which showed cerebellar atrophy and family history), Read More…
Extreme Hike 2026: Grand Canyon 26 hikers. 1 Grand Canyon. 1 mission: A world without Ataxia. MEET THE HIKERS FULL PARTICIPANT LIST FOLLOW THE JOURNEY DONATE This October, NAF will take our mission to new heights with our second annual Xtreme Hike at the Grand Canyon. Together, our team of Read More…
I am Spanish, I am 30 years old and I am a carrier of SCA3 ataxia. My grandmother and my aunt died due to the disease and my mother uses a walker. I still have no symptoms but I have infinite concerns and curiosities about my illness. When Were You Read More…
Grief is universal—painful, sticky, and nonlinear. For those navigating chronic illnesses like Ataxia, grief often resurfaces repeatedly, in waves, each time a new change or loss occurs. This article offers tools, stories, and models for understanding and healing through chronic illness-related grief. Understanding Grief in Chronic Illness What Is Grief? Read More…
As a child, in the 1969’s-1970’s, I can remember my paternal grandfather walking with a wide, somewhat unbalanced gait. He was born in 1896 in rural Michigan, and never diagnosed with a specific disorder. I just thought his problems were due to normal aging. My father, born in 1924, starting Read More…
Written by Alexandra Putka Edited by Dr. Pragya Goel Feeling tired? You’re not alone. Fatigue is a common symptom of Spinocerebellar ataxias and affects quality of life. Spinocerebellar ataxias (SCAs) are characterized by various symptoms, but fatigue is not often included on this list. Fatigue is clinically defined as difficulty Read More…
We’re excited to share that our CEO, Andrew Rosen, was recently featured on the Mission Matters podcast! In the episode, titled “Raising Awareness and Advancing Research,” Andrew discusses NAF’s commitment to accelerating treatment development, supporting families affected by Ataxia, and building a world without this devastating disease. The conversation touches Read More…
Hello my name is Sly. I’m 33 years old. Started to show symptoms at age 21, diagnosed at age 25. Fun fact: before I got diagnosed is that I hiked half Dome in Yosemite. It took me and my family about fifteen hours. When I moved in an apartment with Read More…
Ataxia Tips Real advice from real people living with Ataxia. SUBMIT A TIP RECENT TIPS FOLLOW #AtaxiaTipTuesday Living with Ataxia means adapting every day—and sometimes, it’s the little tips that make a big difference. This series features real advice from real people in the Ataxia community—simple things they’ve done to Read More…
Disability Services and Financial Planning Information and resources on disability services and financial planning for people impacted by Ataxia. What is Disability? What are Disability Services? Disability is broadly defined as any condition that makes it more difficult for a person to do certain activities or interact with the world Read More…
