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).
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NAF is hiring a full time Regional Development Manager. This person will be responsible for generating revenue via traditional non-profit revenue streams including major gifts, recurring gifts, planned gifts, individual giving, corporate and foundation giving, memorials, third party fundraising events and sponsorship procurement. This position will also assist with the Read More…
Ataxia is a family problem. It affects the individual diagnosed of course, but encompasses the rest of the family as caregivers, and those who must wonder and wait if it will continue on to their generation. I am a second generation Ataxia SCA6 patient, my father and his only sibling, Read More…
My name is Lisa Jockims. I am 56 years old and I live in Saskatoon, Saskatchewan Canada. I have been recently diagnosed with Ataxia Telangiectasia. Throughout my adulthood I have had many challenges and struggles. I have had a form of Cancer in my leg , Breast Cancer, Brain Tumor, Read More…
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…
Xtreme Hike 2025: Grand Canyon South Rim 18 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 first-ever Xtreme Hike at the Grand Canyon’s South Rim. Each 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…
