I’m watching a baseball game on TV and a spokesman for ALS is making a presentation of the illness. Not for nothing but we Ataxians need a celebrity to speak for us also. As rare as this illness is, people have to be aware of it. I know not of anyone. Do you?
This would be a hard decision if I were famous and was asked to speak out about a diagnosis. Not everybody has an outgoing personality. On one hand it’s an invasion of privacy…although of course I realise how much has been achieved by Michael J Fox re Parkinsons, ….and of course Christopher Reeves.
Linda Carter was diagnosed with Ataxia Telangiectasia (she spoke out about IBS) and fairly recently a young Australian ‘star’ ( Megan Marx) was diagnosed with SCA6.
I hear what you’re saying but not so sure that I completely agree with you. I don’t feel that it’s an invasion of privacy since Ataxia is not something that could be hidden. Obviously it’s up to an individual if they want to address it but we do need a voice since most doctors have never heard of it so how could we expect the public to know of it?
In the meantime, there are things that we as individuals can do to promote awareness. This link gives suggestions.
I agree. I have always said knowledge is power.
Hi Lori How are things with you…I hope you are as well as possible
Two Disabled Dudes (Kyle Bryant and Sean Baumstark) podcast, Facebook page, ride Ataxia.
Bill Nye the Science Guy has sca 27b and spoke at the NAF conference.
Bob and Brad - physiotherapists on Youtube. Bob has sca.
I am sure there are others