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A 29-Year Journey to the Truth My name is Anamaria Mitre, I am from Zalau, Romania, and I am 42 years old. If you saw me today, you would find me enjoying Read More…
When Mark Minkin signed up for Xtreme Hike, he wasn’t just taking on a mountain. He was taking on a challenge that would honor his wife and help raise awareness Read More…
My story started in 2016 with double vision and eye movements. I went to the neuro ophthalmologist who suggested fixing my problem with Yankee my glasses down over my nose! Read More…
When I had my tinnitus investigated in 2007, a balance disorder was discovered. I was put in touch with a neurologist who suspected something called Ataxia. I have had poor Read More…
Finding Balance: My Journey to a Rare Diagnosis For years, I brushed off the dizziness, fatigue, and the way my feet sometimes seemed to have minds of their own. I’d Read More…
My name is Jorge Alonso, I am 33 years old I was diagnosed with ataxia at 31 or 30, although I really felt the disease since I was 15 years Read More…
Hello, I’m Abdulrahman – in the beginning I was shocked, but then I digested the news, my lifestyle and way of living really helped me in overcoming these hardships When Read More…
Living and Dying with Spinocerebellar Ataxia Type 7: A Carer’s Perspective Affiliation: Husband and primary carer of patient with confirmed SCA7 (ATXN7 gene, 10/49 CAG repeats) Background Spinocerebellar Ataxia Type Read More…
The video above is from Maitreyi’s personal YouTube channel, in which she discusses her experiences living with Ataxia. Mature topics are discussed, viewer discretion is advised. When Were You Diagnosed? Which Read More…
Share Your Story Your voice matters. Your story can drive change. ADVOCACY ADVOCACY TOOLS LEGISLATIVE ISSUES NAF INITIATIVES UPCOMING EVENTS JOIN US >> Personal stories are one of the most Read More…
