Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"... almost all of the nurses and doctors did not know about Kennedy's Disease. I referred them here. I want to thank the creators of this website."

 

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. November 15, 2017 - MDA Announces SBMA Research Grant. For more information, please check out the Living with Kennedy's Disease blog. To view th blog, click here
  2. October 26, 2017 - Thanks to a new, $151,000 grant from the National Institutes of Health, Dr. Heather Montie and her team will spend the next two years creating a preclinical research model using zebrafish, which will hopefully help drive research in SBMA and eventually, help lead to a therapy for patients. For more information, click here.
  3. September 3, 2017 - New Treatment for SBMA approved in Japan. Check out the Living with Kennedy's Disease blog for comments on the study as well as a link to the original article which is written in Japanese. To view the blog, click here.

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2. Clinical Trial Updates

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

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    3. KDA News

    1. January 6, 2018 - 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.
    2. December 15, 2017 - The 2017 KDA Conference Research presentations have been posted on the website. To view the PowerPoint presentations, click here. To view photo's and some video presentations, go to our Facebook page by clicking here.
    3. November 25, 2017 - As of November, 2017 the KDA has awarded over $1,000,000 in research grants to help find a cure or treatment for Kennedy's Disease. To view the 2017 award recipients and summaries of their planned research as well as past years reicpients. Click here.
    4. October 28, 2017 - The 2017 Ed Montie Race to Cure Kennedy's Disease raises over $7500. Thank you to Heather, Gerry, Maria, and Katherine for organizing and everyone that participated in this event.

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    4. Other News and Information

     

    1. December 11, 2017 - Huntington’s Disease and Kennedy's Disease share a common genetic defect. It was first reported several years ago there is an acommonality between HD, KD and SCA-1. A BBC News report just reported a potentialbreakthrough in the treatment and possible cure of Huntington’s Disease. This appears to be another positive step forward in search of an eventual treatment or cure for Kennedy’s Disease. For more information, click here.
    2. November 15, 2017 - The MDA awarded 13 new research grants worth 3.5 million with one of the grants studying Kennedy's Disease. For more information, please click here

     

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