Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I thank God there are so many who will share their story to give others hope!"

 

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. 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.
  3. November 27, 2016 - The 2016 KDA Conference Research information is added to our website. To view the information, click here.  
  4. 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. 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!
  2. June 8, 2017 - Register now for the 2017 KDA conference. For more information and/or to register, click here
  3. 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.
  4. April 24, 2017 - the KDA added a Secure Socket Layer (SSL) to its website for added security. An SSL is a protocol that uses encryption to ensure the secure transfer of data over the Internet.
  5. April 15 2017 - Thank You Dan Jacobs! Dan's - Dim Sum Give Sum Fundraiser raised over $25,000 to help the KDA. For more information. Click here.
  6. April 1, 2017 - Andrew Cassar has become acting President of the Kennedy's Disease Association replacing Ed Meyertholen who has stepped down from the board. To view the 2017 Board of Directors. Click here.
  7. 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.  
  8. 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.  
  9. 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