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Member Stories

Jai Gupta

Hi I am a 62-year-old Indian male living in New Delhi, India. My discovery of Ataxia was quite by accident. I suffer from Essential Tremors and the doctor suggested a gene test about 15 years back. The SCA 12 gene was dominant, but since it was more an ET diagnosis, Read More…

Ingrid ONeal

I have Multiple Sclerosis and Ataxia affects my walking. I never thought of Ataxia as a separate thing, but a friend has it as well. The neurologist at the hospital notice it as well as my MS Specialist. When Were You Diagnosed? Which Type (If Known)? 2021. Not sure what Read More…

Kamal Ansari

A Life of Resilience: Kamal Ansari’s Journey with Ataxia Kamal Ansari gazed out of the window, the sun casting long shadows over his garden. At 72, he had seen more than most could imagine, and his journey had been one of perseverance and resilience. Born in Pakistan, Kamal had served Read More…

Ron Harnish

My journey to diagnosis of Spinocerebellar Ataxia has not been an easy one. There had been plenty of sleepless nights as I allowed my mind to wonder and play the “what if” game. I tried hard not to get caught up in all of the chaos , but there was Read More…

Jean-Marc

Hello..My name is Jean Marc Roy. I am married with two adult children and a grandson. I also have five siblings. I’m 62 years old. In 2013 I had a mining accident and ended up having three operations on my back which resulted with severe drop foot. I have severe Read More…

Phil C.

On my 50th birthday my son and I rode bikes across the state of Kentucky. I did this 7 times before I turned 60. I have always been very active hiking, running, gym, cycling and basically anything to challenge me and contribute to health. I am now 68 and just Read More…

J. Ochs

I’m a wheelchair user and have been for the last 10 years. I was diagnosed with Acute Myeloid Leukemia in 2010, my doctor identified me as having the flit 3 gene which makes leukemia tough to beat without a bone marrow transplant. In the beginning of 2012 I had my Read More…

Anamaria

My start with this condition began at the age of 16, when I started to lose my balance and got a drunken gait. Over time, I lost my reflexes, my muscle strength began to decrease, and my muscles atrophied. The family doctor sent me to an ENT consultation, then at Read More…

Sandy Kaptain

Hi! My name is Sandy Kaptain. About 20 years ago I noticed I was having falls. Just walking around the neighborhood but also when on vacation when there were wet leaves, on rocks, and then I started keeping track of them on a calendar for 3 years. I saw that Read More…

LaTashia Allen

I have Spinocerebellar Ataxia type 2. Also known as SCA2. I was 47 years old when I was diagnosed. I already knew that I had it, because I have a family history of it. My mom had it, her mother had it, my mom’s sisters and one brother all had Read More…

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