See what has been added or updated since your last visit ...
- 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.
- November 27, 2016 - The 2016 KDA Conference Research information is added to our website. To view the information, click here.
- 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.
- 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.
- 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.
- 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.
- Dr. Fischbeck discusses the current trial for BVS857 in the March 01, 2014 Chat
- Excerpts from the chat can be found in the Living with Kennedy's Disease blog
- The Clinical Trial announcement can be found at the NIH Clinical Trial webpage
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
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.