Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The KDA is an excellent group of caring and dedicated members that are always there if more support and hope is needed."


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! The 2018 KDA Conference will be held in San Diego, CA. Wednesday, 10/31 thru Friday 11/2/18. Details will be posted soon. Look forward to seeing everyone!

Stephanie Izard hosting pop-up dim sum fundraiser at Duck Duck Goat on February 11th with guest chefs Dan Jacobs and Dan Van Rite, who co-own DanDan, an American-Chinese restaurant, in Milwaukee. The beneficiary of the charity event will be the Kennedy’s Disease Association. For more info, click here.

February 28th is Rare Disease Day. The global theme for Rare Disease Day 2018 is research.  Research brings hope to people living with rare diseases. To learn more about Rare Disease Day. 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