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dudleian

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1 reviews

Review for Kennedys Disease Association, Coarsegold, CA, USA

Rating: 5 stars  

I found the superbly informative KDA site intially by googling KD 2 years ago finally -after 35 years worsening and reporting to doctors and uncertain neurological clinical specialists - having (UK) NHS DNA test confirmation in 2001, aged 66. After diagnosis a clincal geneticist -who'd never encountered KD - said that I might be wheel chair bound in "later years". Other than being told there was no cure, no other information was available. Luckily my great neice holds a PhD in neuro-sciences, being a university lecturer, obtained far more details and arranged for my maternal family's female testing. (which took NHS forever). Although Im never around for chat room sessions (being In the UK) they are very informative and inspiring.

I've personally experienced the results of this organization in...

helping me cope day to day with KD

If I had to make changes to this organization, I would...

offer none - why change a winner!

Role:  Volunteer & I've sent modest donations for KD research funding. .