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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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 European Neuro Muscular Centre lay report "Towards a European Unifying Lab for Kennedy's Disease" was published. The purpose of the lay report is to share information on the workshop with the lay community, i.e. the patients and their representatives.To view the report, click here.

    • New kennedy's Disease Research - Muscle and not neuronal biomarkers correlate with severity in spinal and bulbar muscular atrophy. To learn more, click here.

    • 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