Tuesday, March 30, 2010

Inspirational Alan Thomas

Alan Thomas, one of the community managers at LivingWithAtaxia, a patient to patient support network started by Ben's Friends, was profiled recently by Race Online 2012. I know him well via the Internets and he is an incredibly inspirational guy.

"Alan Thomas was diagnosed with ataxia, which is an incurable and degenerative neurological condition, 21 years ago. The disease affects balance and coordination and makes it difficult for Alan to carry out simple, daily, tasks, and things most of us take for granted, like just lighting a match. He refuses to be cowed: he uses a tricycle to keep active and travels widely (with his trusty wheelchair).

Computers, though, have taken on a real added significance since his diagnosis: Alan is trustee of Ataxia UK and UK Community Manager of livingwithataxia.org, so he uses the internet as an advocacy tool and to share information and build a support network with others who have this rare condition. He also uses modern technology as a tool for self-expression: an uplifting film he made about his life with customary vim has seen online by thousands of people.

“A computer gives me a voice,” he says simply. “It helps me 100%.”