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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…
Artisans for Ataxia A virtual art auction that showcases original, handcrafted works to raise funds and awareness for Ataxia. DONATE ARTWORK HOW THE AUCTION WORKS CONTACT US Artisans for Ataxia is a vibrant online auction that brings together artists and supporters to fuel progress in the fight against Ataxia. This Read More…
Guest Author: Camille Johnson Moving is one of those life events that sits at the intersection of stress and excitement, but for people living with Ataxia, it’s a different kind of math entirely. The logistics don’t just ask for planning—they demand precision. And while well-meaning friends may offer up Pinterest checklists Read More…
Guest Author: Ellie Martin Summer is here! I’ve put together a list of products that might be particularly useful during this time of year. Many of these products have been suggested and reviewed by Day Undefined, a website of everyday products for accessible living. All of the products that they Read More…
