Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

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The KDA's mission is to inform, support, educate, fund research, and find a cure for Kennedy's Disease 

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Kennedy’s Disease (spinal and bulbar muscular atrophy) is an adult-onset “X” linked inherited disease with symptoms usually beginning to appear between the ages of 30 and 50.

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The Kennedy’s Disease Association has worked to educate others about this lesser-known disease and to support clinical research efforts.

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It takes an enormous amount of money to fund research…more than any of us can afford alone, but together, we are capable of great accomplishments.

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It is passed on from generation to generation in families worldwide. Males generally inherit the disease symptoms and females are the carriers.

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Medical ID Card

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Members, you may make a copy of this card for your wallet by clicking here. We will also have laminated cards available at the 2017 KDA conference. You may also send an email to: This email address is being protected from spambots. You need JavaScript enabled to view it.. Jane Martin has made these ID cards and will mail one to you at her expense. She suggests you make a donation to the KDA in lieu of payment if you wish. We are grateful to Jane for her generous project benefitting members!

 

 

 

 

 

 

 

 

 

 

 

 

How to contact the KDA

 

  • To send a quick message to the KDA, please use the Contact the KDA form below.
  • For general questions, comments, and suggestions, send an email to This email address is being protected from spambots. You need JavaScript enabled to view it..
  • For comments concerning our website, please contact the This email address is being protected from spambots. You need JavaScript enabled to view it..
  • Or, call, fax, or email the KDA.

Kennedy's Disease Association, Inc.KDA-Call-Away

P.O. Box 1105, Coarsegold, CA  93614-1105 (U.S.A.)

Phone:  (855) 532-7762

Phone:  (734) 288-5580 (For Outside the US)

Fax: (855) 532-7762

Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

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SAVE THE DATE - 2019 KDA Conference

November 13, 2019 - November 15, 2019. Orlando, Florida   


  • The 2018 Kennedy's Disease Conference research presentations and photos have been added to the website. To view, click here

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  • The NIH (National Institutes of Health) is collecting DNA samples for a KD study. They are looking for genetic markers that impact the progression of KD and our quality of life. If you have been diagnosed with Kennedy's Disease, please contact Angela Kokkinis at This email address is being protected from spambots. You need JavaScript enabled to view it. and she will send you a saliva collection kit.

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    The Living with Kennedy's Disease Blog