Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Back in the late 1990s, I felt alone. I had just been diagnosed with Kennedy's Disease. I came across the KDA and attended a Saturday chat. What an eye opener! There were two dozen others on the chat that were going through what I was experiencing."

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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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  •  2019 Kennedy's Disease Research Grant Proposal Announcement 

    The Kennedy's Disease Association (KDA) is planning to fund one or more research grants this fall to further the understanding of the pathological mechanisms of Kennedy's Disease. Applications from junior investigators and from senior post-doctoral fellows are encouraged. 

    The KDA will be offering two levels of funding.  For independent investigators (e.g. assistant professors, etc.), grants will be funding up to $75,000.  For postdoctoral fellows/senior trainees, grants will be funding for up to $50,000.  For the latter, please include a letter of support from your mentor as a supplement to your application. Your proposals must be received by Friday, July 13, 2019. For more information, click here.


  • 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.


  •  SAVE THE DATE - The 5th Annual Ed Montie Race for KD will be held on Saturday, September 21st, 2019


  • 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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  •  Living with KD Logo medium

    The Living with Kennedy's Disease Blog