Real Life Ataxia and Rare disease Health Stories

Here we have a collection of stories, from people sharing the patient “Adventure”. Their stories help to spread awareness and understanding of the diseases


As part of the Ataxia Aware project we are sharing personal accounts of those suffering with Ataxia or other rare conditions. We want to provide a safe space for people...

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Alan and JC

Ataxia has NO Borders

Our founder Alan Thomas (@ataxiaandme) met with John "JC" Colyer at the 9/11 memorial in New Jersey. It was a moving experience in a very emotional place.

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I am Now Ataxia Aware!

Up until two months ago I had never heard of Ataxia or other rare diseases. As a third year English Literature and Creative Writing undergrad unless it was Shakespeare, I...

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15 Years of Rare

After 15 years of living with my rare disease Immune Thrombocytopenia (ITP) I can reflect upon plenty of incidents during that time. It has certainly been eventful, to say the least....

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Darcy’s CACNA1A Story

My name is Darcy Marie. I enjoy the simple things, shopping, horseback riding, walking in the park. But today I’m going to share my story.

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