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...
Read MoreReal 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
Patient Power and Participation
The aim of this PhD study is to explore the relationship between quality of life and social support for adults living with rare genetic skin conditions.
Read MoreInternational Ataxia Awareness Day and What is Ataxia?
International Ataxia Awareness Day (IAAD) is on September 25 of each year. It is a coordinated effort from individuals and Ataxia organisations around the world to help shed light on...
Read MoreMegan’s Journey: eSCAping Type 1
Hi, I’m Meg - a 31 year old with a rare disease called Spinocerebellar Ataxia – Type 1.
Read MoreLiving with Lipodystrophy by Becky Smith
Blog author, Becky Smith, writes about her personal experience with Lipodystrophy.
Read MoreAtaxia 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.
Read MoreI 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...
Read More15 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....
Read MoreFrom Challenging Phases to Facing Challenges
Son Zoyeb Mohamed Zia has Ataxia and is currently working as an Assistant Professor.
Read MoreDarcy’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.
Read MorePoland 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.
Read MoreLinda’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.
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