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June 15, 2011

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June 15, 2011

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.

The Great!

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

helping me cope day to day with KD

Ways to make it better...

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

offer none - why change a winner!

November 19, 2010

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Review from Guidestar
November 19, 2010

As a retired otolaryngologist, and a patient of Kennedy┬┤s disease, my contact with Kennedys association has made me start as an informer, of this rare disease, within, my friends, neurologists.

The Great!

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

Thanks to their information, we obtained, the clue to know the source (surname) involved in the transmition of the abnormal gene

Ways to make it better...

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

Try to promote similar organizations in all the countries with patients involved

November 17, 2010

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Review from Guidestar
November 17, 2010

Hi, my name is John, from Barcelona, Spain. When I was diagnosed KD in 2000 I know nothing about it. I do not succed looking for another KD suferers in Spain in order to share experiences. Surfing internet I found the KDA and for me was like an island for a castaway. Thanks to them I found myself less alone than before, I have a lighthouse to find my way. Thanks guys, you are doing extremely well.

The Great!

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

help myself

Ways to make it better...

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

I will do nothing

November 16, 2010

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Review from Guidestar
November 16, 2010

KDA was a godsend to me shortly after I was diagnosed with Kennedy's Disease (in 1996). KDA's web site contains information about the disease, personal experiences, and much good advice. The web site acted as a central organizing influence for the sharing of information and brotherhood. Without KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable. KDA provided a point of communication for the NIH, which performed a clinical trial with subjects recruited via the web site, in which I participated. KDA's research donations have been seminal in increasing the knowledge of this disease; at the KDA conferences, attendees can participate by learning more about the gritty details of the biology of the disease. The state of the art for KDA progresses through the KDA's contributions. Weekly chats, forums, and hyperlinks to important sources of information round out the features of KDA that I use. It is an awesome organization.

The Great!

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

Increased my knowledge of the biology, symptoms and effects of this disease. I learned techniques and product information that has proven valuable in everyday life.

Ways to make it better...

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

Make it a lot richer so that it could fund more research.

November 16, 2010

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Review from Guidestar
November 16, 2010

The site is essential for a source for the general public, whenever one encounters the diagnosis of Kennedy's Disease and has no idea what that might be. Families can find out about how to identify it, how the disease is transmitted and what are the latest remedies for the associated symptoms. There is simply no other source easily available to the public.

The Great!

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

See above

Ways to make it better...

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

I don't know.

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