Empowering the Patient – Ataxia Aware
Category: Blog
The Carers Perspective: Karl Treharne
Karl Treharne
Be Part of Something Powerful
Rare QoL
Megan’s Journey
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International 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 this rare disease. Ataxia could be the most serious condition you have never heard of.
Megan’s Journey: eSCAping Type 1
Hi, I’m Meg – a 31 year old with a rare disease called Spinocerebellar Ataxia – Type 1.
Living with Lipodystrophy by Becky Smith
Blog author, Becky Smith, writes about her personal experience with Lipodystrophy.
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.
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 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.
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. I have jumped numerous fences and dived through more hoops than I care to remember.