Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I attended a KDA Conference. Personally meeting several the doctors and researchers actively trying to find a cure has changed my life. I now have hope!

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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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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


1. Research Updates

  1. 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.
  2. November 27, 2016 - The 2016 KDA Conference Research information is added to our website. To view the information, click here.  
  3. August 6, 2016 - SMA Drug Trial Goes So Well It Ends Early. This Los Angeles Times article on a new treatment for SMA Type 1 is very promising news and it might lead to additional breakthroughs for Type 2, 3 and 4. SMA is different then SBMA (Kennedy's Disease), but antisense technology is being used in other progressive disorders. To read the article, 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. January 25, 2017 - As of January 1st, 2017, Ed Meyertholen became acting President of the Kennedy's Disease Association. Ed replaces Lou Tudor who stepped down as President and will remain on the Board as a director. To view the 2017 Board of Directors. Click here.  
  2. January 16, 2017 - Last month the Living with Kennedy's Disease Blog hit 1 Million page views! The blog was created back in August of 2009 by Bruce Gaughran. In his blog, Bruce writes about learning to live with Kennedy's Disease and its challenges. It's a must read for anyone suffering from KD. The KDA Board wants to congratulate Bruce on this wonderful milestone and thank him for helping so many people with KD understand and live with this rare disease.  
  3. November 5, 2016 - The KDA is pleased to announce that it has awarded $150,000 in research grants for 2016. For information on the recipients and their research, click here

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4. Other News

  1. October 4, 2016 - October marks the 30th anniversary of the Air Carrier Access Act (ACAA) — the law that requires equal access to passengers with disabilities. The MDA is working with policy makers, industry leaders and disability travel advocates to support increased accessibility to air travel.The MDA is asking for passengers traveling on planes as a passenger with disabilities or a companion to one to fill out a short survey so they can make the disabled Voice heard. To partake in the survey, click here.

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The National Organization for Rare Disorders (NORD) will highlight and publicize the Kennedy's Disease Organization on February 23, 2016. To visit NORD's website, click here