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
Guest Author: Beverly Nelson Becoming a caregiver for someone with ataxia changes the rhythm of your days almost overnight. The mix of medical responsibilities, emotional support, and constant problem-solving can be both meaningful and exhausting. Without a plan for your own well-being, the role can quietly erode your health and Read More…
The first sign something was not right was in 2012, when I found I could not carry a cup of coffee across an open space without spilling it. It took over year to get a diagnosis, and I was told there was no cure, or even treatment. Physiotherapy was recommended. Read More…
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 21 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…
