Hi, I’m Meg – a 31 year old with a rare disease called Spinocerebellar Ataxia – Type 1.
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.
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 was oblivious. Out of chance I saw an advertisement on my university job board for a volunteer content writer for a charity called Ataxia & Me.
Son Zoyeb Mohamed Zia has Ataxia and is currently working as an Assistant Professor.
My name is Linda, I am 33 years old and I was born on May 23 1987, in the Park Lane Clinic Johannesburg South Africa, on my Gran’s birthday.
For the past six years, my summer vacation in the last week of July was taken by participating in this little ride called RAGBRAI …
A blog by Sondra Butterworth. Quality of life and social support: a mixed methods case study of adult living with rare genetic skin conditions.
My name is Elise, I am 31 years old and was diagnosed with spastic ataxia in 2011, at age 23.
My name is Darcy & this is my story “Life with Ataxia” my journey to diagnosis. I was born July 26th 1992 & I was considered a developmentally delay child. I was late to walk, talk & use motor skills.
I’m going to tell you something that’s going to shock you to the core; having ataxia isn’t easy in any way, shape or form. Are you surprised? The loss of balance and having to accept that life will be very different for you in so many ways you couldn’t even imagine from learning to use a mobility aid to managing a pharmacy’s worth of meds. But that’s just the physical side, no one really mentions the toll it has on your mental health.