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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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…
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…
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…
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…
Milian’s Journey with Ataxia – Searching for Answers, Hope, and Guidance My wife, Milian, has always been the picture of health—an active yoga practitioner and a strong advocate of mindful living and healthy habits. Never in our lives did we expect that she would be diagnosed with idiopathic cerebellar degeneration Read More…
My Journey with Ataxia: From Despair to Hope A Personal Story of Struggle, Resilience, and Advocacy Ataxia, you took so many beautiful souls from us! It is high time that we put an end to this! It was so disheartening to see how Ataxia took the lives of my loved Read More…
Hello, my name is Ad, I am 62 years old and I live in the Netherlands. I am married with Marina and we have a daughter Dorith. Since September 2023 we have a grandson Matteo. Some 10 years ago I sometimes lost my balance and fell. I had no reason 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…
