Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I am very glad to see that you have added the personal stories, they are a great help. They give an outlook on what to expect with such a disease. It makes me proud to see people who are willing to express and share their stories with the world, keep up the good work!"

 

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. May 26, 2017 - The study, Identification of Neuron Selective Androgen Receptor Inhibitors was just  published by the World Journal of Biological Chemistry this week. Check out the Living with Kennedy's Disease blog for comments on the study as well as links to the news article and published results. To view the blog, click here.
  2. January 4, 2017 - The study, Decreased Peak Expiratory Flow Associated with Muscle Fiber-Type Switching in Spinal and Bulbar Muscular Atrophy was just published. Check out the Living with Kennedy's Disease blog for comments on the study as well as links to the news article and published results. To view the blog, click here.

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2. Clinical Trial Updates

  1. June 17, 2015 - The results of the Exercise Trial that was conducted at the NIH in Bethesda, MD are in - Click HERE for more information.  
  2. May 21, 2015 - The NIH is now actively recruiting patients for the second phase of the BVS857 clinical trial.  Please click HERE for more information.
  3. March 1, 2014 - Clinical trial for Kennedy's Disease:

Dr. Kenneth Fischbeck from the National Institutes of Health was the guest for the KDA chat room. Dr. Fischbeck is a leading researcher, professor and educator on the subject of Kennedy's Disease. The chat focused on current NIH research projects for finding a treatment for Kennedy’s Disease.

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3. KDA News

  1. August 10, 2017 - Please welcome the KDA's newest board member Kathy Thompson to the KDA board of directors. To view Kathy's bio, click here.
  2. July 30, 2017 - 3rd Annual Ed Montie 5K race to cure Kennedy's Disease will be held on Sunday, September 17, 2017 @ 10am in Lincoln Park, Michigan. For more information. Click here.
  3. June 14, 2017 - Jane Martin has made medical ID cards that mention the holder has Kennedys Disease with an anesthesia warning. She is offering to mail you one at her own expense. She suggests you make a donation to the KDA in lieu of payment if you wish. To request a card, contact Jane via e mail at This email address is being protected from spambots. You need JavaScript enabled to view it.. You can view and print a copy of the card by clicking here. We are grateful to Jane for her generous project benefitting members!
  4. June 8, 2017 - Register now for the 2017 KDA conference. For more information and/or to register, click here
  5. May 30, 2017 - Thank you Emily Martin! After Emily's dad was diagnosed with Kennedy's Disease. Emily and her mom created a website to bring awareness and help us find a cure for Kennedy's Disease by selling leather bracelets. All proceeds go to the KDA. For more information or to buy one, click here

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4. Other News and Information

  1. August 14, 2017 - Biologist Neville Sanjana does a good job of explaining what CRISPR is, how it works, and its potential. Those of us living with KD are very interested in the potential tools like CRISPR offer for future generations. To watch the video, click here. To see the KDA's video library, click here.

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