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!

Archived KDA News

Other News Archive (2017 and Older)

  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
  3. September 3, 2017 - NORD is holding their Rare Diseases and Orphan Products Breakthrough Summit on October 16-17, 2017 in Washington, DC. For more information, click here.
  4. 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.
  5. 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.
  6. April 8, 2016 - Kennedy’s Disease is mentioned for the first time in a parliamentary debate. A husband with KD and his wife speak to the All Party Parliamentary Group on living with a Motor Neurone Disease. To read the article, click here.
  7. February 8, 2016 - California considers funding controversial research: editing genes in human embryos. To read the article, click here.
  8. November 30, 2015 - The MDA published the following article on a Kennedy's Disease researcher many of us know. The article is titled "Five Questions with SBMA Researcher Diane Merry". To read the article, click here.
  9. November 26, 2015 - Japan's health ministry approved the sale of a wearable walk-assist robot for use in medical facilities. To read the article, click here.
  10. June 4, 2015 - Medscape published a document in March of 2014 that has everything you wanted to know about Kennedy's Disease but were afraid to ask... check it out!
  11. May 22, 2015 - The United Kingdom group just launched a great looking Kennedy's Disease UK website.  Please have a look and thank them for helping spread awareness of KD.
  12. May 6,2015 - Everything You Need to Know About CRISPR, the New Tool that Edits DNA.
  13. April 8, 2015 - Kudos go out to Thomas Balázs-Csiki for launching a website for KD'ers in Hungary.  View his website HERE.  We now have a contact in Hungary!  Thanks Thomas.
  14. February 24, 2015 - In an article titled "UK approves three-person babies", the BBC reports improvements in IVF procedures that could be applied to KD patients.
  15. September 19, 2014 - Bionic Suit cleared by FDA for home use. The article by Bionics Research is a major step forward for individuals with spinal chord injuries. It is also important for people living with a progressive neuro-muscular disorder like Kennedy's Disease. The more of these units the hit the market, the lower the cost. It also allows for even greater testing and generates interest in the technology.world for similar units that will support other uses.
  16. September 19, 2014 - House and Senate pass MD CARE Act. The MD CARE Act passage is quite important for all of us living with a muscular dystrophy related condition, including Kennedy's Disease (SBMA). The following writeup from the MDA reflects this milestone event. Follow the link to the article and check out the 'timeline' (2000-to-2014). For example, NIH funding in 2000 was $14M. In 2014 it is $75M.
  17. August 15, 2014 - Ted Abbott is promoting Kennedy's Disease awareness with his Sailing 4 All on the James River in Richmond, VA.
  18. February 18, 2014 - NINDS Kennedy's Disease Information Page.
  19. October 25, 2013 - Updated the KDA Tissue Donation Guide.
  20. October 16, 2013 - Simple Google Translator feature added to the top right of all KDA web pages.  Once a language has been selected, it will remain in effect until another language is selected.
  21. April 28, 2013 - Published the Spring KDA Newsletter.
  22. April 28, 2013 - Added Face, Swallowing and Lung Exercises that were recommended by a physical therapist.
  23. April 21, 2013 - The United States Library of Medicine has published the “Genetic Home Reference - Your Guide to Understanding Genetic Conditions.” This website is very user-friendly, yet a comprehensive guide to most genetic disorders including Kennedy’s Disease (SBMA). The explanations are well written and for the layperson. The blog article shows a series of screenshots of the main pages of the guide. Check it out.  Link to Living with KD Blog Post --------- Link to Reference Alliance
  24. February 20, 2013 - On March 1, the automatic budgets cuts for government agencies known as sequestration will take effect if Congress has not resolved the current budget impasse.  This could have a very harmful effect on medical research programs at NIH and the review of potential new therapies at FDA.  Please visit NORD's online Advocacy Action Center now to submit a letter to your elected officials or to personalize the letter with your own information.
  25. October 03, 2012 - NORD Press Release: Can our society afford to provide treatments for people with rare disorders? (This is a great explanation by Doris T. Zallen, PhD, professor of science and technology in society at Virginia Tech and a long-time adviser to NORD)
  26. February 09, 2012 - The 2011 KDA Annual Report was published.
  27. January 13, 2012 - A revised KDA Chat Room Schedule was published.  There are now five chat rooms each month.  Three unhosted chats will allow for Europe and the Pacific Rim to participate at a more reasonable time.
  28. January, 2012 - Added new chat room transcripts
  29. December 27, 2011 - New North Carolina and Tennessee doctors added to doctors familiar with Kennedy's Disease.
  30. October, November & December, 2011 - Several chat room transcripts added including Ed Meyertholen's research update from the KDA Conference
  31. November 23, 2011 - Updated KDA's Frequently Asked Questions