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...
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.
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...
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....
From Challenging Phases to Facing Challenges
My Son Zoyeb Mohamed Zia has Ataxia and is currently working as an Assistant Professor...
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.
Poland Syndrome Awareness and Me
My story with Poland Syndrome started the day after my son was born, when I noticed his fingers were joined together.
Linda’s South African Story
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. I...
More Than What’s on the Surface
My name is Scott Armit, I’m 30 years old from Glasgow, Scotland. I was diagnosed with a genetic neurological disease called Friedreich’s Ataxia aged 23.
Lisa Antonelli Cole’s Long Journey to Diagnosis
I was diagnosed in December 2013, though I was misdiagnosed for several years prior. I feel very badly that misdiagnosis of ataxia is...
Emily’s 427 Mile Trike Ride with Ataxia
For the past six years, my summer vacation in the last week of July was taken by participating in this little ride called RAGBRAI which stands for ....
Patient Power and Participation
Quality of life and social support: a mixed methods case study of adult living with rare genetic skin conditions. A blog by Sondra Butterworth
Rare disease has no borders
My name is Mark Desa. I'm from Ontario, Canada - just outside of Toronto. I have ARCA1 (or Autosomal Recessive Cerebellar Ataxia type 1). This is my story.
