Join our free Let’s Move Exercise Program! Accessible, expert-led virtual sessions to help you build strength and improve balance from home. REGISTER
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 Were You Diagnosed? Which Type (If Known)? October 2023 How Has Ataxia Impacted Your Life? It has been challenging and 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 7 (SCA7) is a rare, autosomal dominant neurodegenerative disorder characterized by progressive cerebellar ataxia and cone-rod retinal dystrophy. The following Read More…
http://youtu.be/sYccDzT25eY?si=f6GkonkY4FvsyFHy 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 Type (If Known)? Toronto, ON, Canada – SCA Type 2 How Has Ataxia Impacted Your Life? Negatively. This all Read More…
When I turned 20, I started to notice something was different about me. I had a brain MRI, which showed that I probably had Ataxia. My mom and I went to the doctor for further examination, and he confirmed it. To be 100% sure, they performed genetic testing, which confirmed Read More…
I am a Registered nurse who recently went on disability for Spinocerebellar Ataxia. My family tree is full of members with this same illness. I want to spend the rest of my life helping others to eventually find a cure or in whatever capacity that may be. When Were You Read More…
I have a beautiful wife and 3 grown kids. I have always been very active, running track and cross-country in high school and road races in my early and latter years, I have always loved to run. I worked in the produce dept for a grocery chain for almost 36 Read More…
Note: Aude submitted her story in French. ChatGPT was used to translate her submission. The translation may not be accurate. We will include her submission in French, followed by the English translation in italics. Bonjour à tous je viens d être diagnostiquée pour la maladie de Canvas la semaine dernière Read More…
I am pleased to share some exciting news with you. I am a 67-year-old woman with a diagnosis of SCA8, and for the first time in a long time, I feel incredibly optimistic—I truly believe I have turned things around. Each morning, I begin with a one-mile walk followed by Read More…
I’ve had balance and coordination issues my whole life – but I really started noticing it 10 years ago. I think the stress of myself going back to college (Bachelor’s Degree) is what kicked the symptoms off. I work a semi-desk job (IT Support) but it’s tougher when I have Read More…
My grandmother died prematurely from ataxia when I was just a baby, 26 years ago. Now today, my aunt has severe SCA and my mother is also starting to show symptoms. I also am very concerned for my cousin, my brother, my sister, and myself; not to mention, my newborn Read More…
