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."


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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What-is-newSee what has been added or updated since your last visit ...


1. Research Update

2. Clinical Trials

3. KDA News

4. Other News and Information 

1. Research Updates

  1. August 15, 2019 - Efficacy and safety of leuprorelin acetate for subjects with spinal and bulbar muscular atrophy: pooled analyses of two randomized-controlled trials. To learn more, click here.
  2. August 15, 2019 - SBMA Patients are More Likely to be Affected by Metabolic Disorders, Heart and Liver Disease. To view the study, click here.
  3. March 16, 2019 - 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.
  4. February 25, 2019 - Muscle and not neuronal biomarkers correlate with severity in spinal and bulbar muscular atrophy. To learn more, click here.

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2. Clinical Trial Updates

There are currently no trials being conducted. For information regarding past trials. Click here

3. KDA News

  1. August 15, 2019 - The 5th Annual Ed Montie Race for KD will be held on Saturday, September 21st, 2019. To register, click here
  2. May 30, 2019 - SAVE THE DATE - The 5th Annual Ed Montie Race for KD will be held on Saturday, September 21st, 2019
  3. April 5, 2019 - Fun in the Sun and Living Well with KD is the 2019 KDA Conference Theme this year. For more information on this years conference, click here. To register, click here.
  4. March 12, 2019 - The KDA has been notified that there is a SBMA Association (the Patient group of Spinal Bulbar Muscular Atrophy in Japan). To view their website, click here.

4. Other News and Information

  1. February 11, 2019 - February 28, 2019 is Rare Disease Day. To learn more about the day and events connected to the National Organization of Rare Disorders (NORD), Click here.