Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Surfing the internet I found the KDA and for me it was like an island for a castaway. Thanks to them, I have a lighthouse to help find my way."

Archived KDA News

KDA News Archives (2017 and Older)

  1. 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.
  2. 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.
  3. 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.
  4. September 24, 2017 - The KDA 2017 Converence agenda has been released. To view the agenda, click here. For more information and/or to register, for the 2017 conference, click here
  5. September 2, 2017 - The KD Golf Scramble committee announces that the 7th annual KD Golf Scramble Tree of Hope event will be held on September 30, 2017 in Magnolia, TX. For more information, click here.
  6. August 20, 2017 - The medical article, Previously Undiagnosed Spinal and Bulbar Muscular Atrophy as a Cause of Airway Obstruction after Robot-Assisted Laparoscopic Prostatectomy was added to our medical library section. To read the article, clickhere. To view our medical article section, click here
  7. August 10, 2017 - Please welcome the KDA's newest board member Kathy Thompson to the KDA board of directors. To view Kathy's bio, click here.
  8. July 30, 2017 - 3rd Annual Ed Montie 5K race to cure Kennedy's Disease will be held on Sunday, September 17, 2017 @ 10am in Lincoln Park, Michigan. For more information. Click here.
  9. 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!
  10. June 8, 2017 - Register now for the 2017 KDA conference. For more information and/or to register, click here
  11. 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
  12. 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.
  13. 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.
  14. 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.
  15. 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.  
  16. 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.  
  17. 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
  18. September 26, 2016 - On his Living with Kennedy's Disease blog, Bruce Gaughran has compilled a list of You Tube videos concerning Kennedy's Disease. To access this list, click here.
  19. August 6, 2016 - The KDA website is proud to provide information, education, and support to over 4 Million visitors.
  20. August 5, 2016 - The KDA is pleased to announce the addition of two new board members. Both men are very qualified and anxious to begin serving this Association. We appreciate their enthusiasm and give a warm welcome to David Yelton and Todd Allen! At the same time, we thank Paul DeSchamp for the many years of his service to the KDA board of directors. Paul has now retired and we wish him many more years of living the Florida lifestyle he's chosen for himself and his wife, Jeanne.
  21. July 27, 2016 - An opportunity to support the KDA. The Ed Montie race to cure Kennedy's Disease. Sunday, September 18, 2016. Council Point Park, Lincoln Park, Michigan. For information and to register. Click here.
  22. July 1, 2016 - The 6th annual KD Golf Scramble in Texas is underway! The committee members met on May 22nd to begin the planning for this exciting event. The golf tournament will be held at High Meadow Ranch Golf Club in Magnolia, Texas on Saturday, September 24th. For more info, click here
  23. May 30, 2016 - The KDA 2015 Annual Report is now available. To view the PDF, click here.
  24. May 1, 2016 - Dr. Cindy Jordan joins the Scientific Review board. To view the current board members, click here
  25. April 10, 2016 - We are truly saddened to report the death of one of our founding members, Terry Waite. Terry made this world a better place, by bringing us all together to help find a cure for Kennedy's Disease. To view Terry's Memorial page, click here.
  26. April 6, 2016 - The Kennedy's Disease Association is planning to fund one or more research grants this fall to further the understanding of the pathological mechanisms of Kennedy's Disease. For more information, click here.
  27. February 3, 2016 - 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
  28. January 15, 2016 - The 2016 KDA Conference will be held at the Holiday Inn 4875 N. Harbor Drive San Diego, CA on November 9-10-11.  
  29. January 13, 2016 - The KDA is now mobile! The KDA website can now be viewed on you mobile phone and tablet. 
  30. December 2015, the KDA Christmas Newsletter which includes 2015 KDA Conference information is now available. 
  31. As of July 2015, the KDA Website has provided information, education, and support to over 3 Million visitors.
  32. July 2015 - The KDA Forum is averaging 15,000 visitors a month. 
  33. June 25, 2015 - The Annual CNY Golf Scramble is now open for registration and sponsorships.  Please consider attending, sponsoring, or donating to this worthy event to raise funds for KD research and education.
  34. May 27, 2015 - The 2015 KDA Conference is scheduled for October 14 - 16 in Chicago, IL.  Please plan on attending this year and register early.
  35. April 30, 2015 - KDA Annual Report for 2014 is now available.
  36. February 19, 2015 - Winter KDA Newsletter is now available.
  37. February 10, 2015 - Ronald Moffett joins KDA Board of Directors
  38. November 30, 2014 - Bob Tudor is rolling for the KDA in another Handcycle Marathon. This will be his 3rd marathon and 2nd fundraising event. Please go to His Fundraising Page and support him today!
  39. October 07, 2014 - The KDA launches its new website with improved technology, uptime, security and capabilities.
  40. October 4, 2014 - The first recorded KDA Webinar with Heather Montie describing progress with her research grant was held in place of the regular scheduled KDA chat. Please let us know if you like this form of a webinar chat instead of a typing chat.
  41. September 27, 2014 - Golf Scramble in Texas raised over $32,000!
  42. August 18, 2014 - First Annual KD Golf CNY Scramble in New York raised over $8,000!
  43. May 5, 2014 - The 2014 KDA Conference and Educational Symposium is scheduled for November 12 - 14.
  44. April 18, 2014 - KDA's Spring KDA Newsletter is now available.
  45. March 26, 2014 - AmazonSmile has been added to the KDA Online Shopping page. The KDA will receive .5% of all eligible purchases you make. If you're not a member of Amazon you can sign up - if you already are a member you can accept the KDA as your charitable organization and continue to use Amazon for the same great savings as before. Thank you for using AmazonSmile!
  46. February 1, 2014 - Monthly Messages will now be sent to all registered associates. If you would like to be included in this distribution list, please click the Join Today! button at the bottom of the KDA Home page.
  47. January 19, 2014 - Maria Montie joins KDA Board of Directors.
  48. January 3, 2014 - The second annual Queen Anne's 5k Trail Race (bike paths and dirt trails in the woods) at Western Regional Park in Cooksville, MD will take place on April 6, 2014.
  49. December 13, 2013 - Here is a message from the KDA President, John Coakley:  Holiday Greetings
  50. December 10, 2013 - Bob Tudor has raised over $5200 in donations so far in his Handcycle Marathon!  Congratulatiopns, Bob!!!
  51. November 16, 2013 - The 2013 KDA Golf Scramble raised $23,600 this year.  Congratulations to the entire Golf Tournament Team!
  52. September 25, 2013 - Ethan’s Bracelets: Seven year old Massachusetts boy making rubber band bracelets for golf tournament.
  53. September 10, 2013 - Ed's running another Half Marathon!  Please support him in this awesome effort to raise funds for the KDA.
  54. July 29, 2013 - The 2013 KDA Conference and Educational Symposium is scheduled for November 6 - 8
  55. July 26, 2013 - The 2013 KDA Golf Scramble is scheduled for September 28, 2013.  Please show your support.
  56. April 14, 2013 - The Queen Anne's Race was a success raising over $13,000.
  57. April 05, 2013 - KDA Annual Report is available (PDF)
  58. February 21, 2013 - KDA Research Grants are available for the fall of 2013.
  59. January 12, 2013 - Support the 1st Annual Queen Anne's Race to end Kennedy's Disease on April 7th.
  60. December 10, 2012 - Team - Great Britain has their own section of the KDA website and the KDA Forum.
  61. November 23, 2012 - KDA's Winter Newsletter is now available for download.
  62. November 13, 2012 - Robert Behymer joins the KDA Board of Directors and assumes the responsibilities for fund raising.
  63. October 15, 2012 - Do you want to hold a Golf Fund Raising Event, but don't know how.  There is help available!
  64. October 01, 2012 - The KDA Golf Tournament team raised $18,000 this year.  Thank you team!
  65. August 11, 2012 - After swearing to never participate in another Ironman event, on August 26, 2012 Sean Blasko is again running for a cure for Kennedy's Disease.  Please support his efforts and our cause.
  66. July 20, 2912 - The 2012 KDA Golf Tournament is scheduled for September 22.  Please show your support.
  67. July 12, 2012 - About 3:57 today the website had its one millionth visitor.  This is quite the milestone for the KDA.
  68. June 21, 2012 - Added additional information on the 2011 KDA golf tournamentIt raised $16,000 in donations. The Golf Team is planning another tournament in October of 2012.  Watch for additional information on how you can support this event.
  69. May 16, 2012 - The Spring KDA Newsletter is now avalable
  70. April 23, 2012 - Ron Wiker, Vice President of the KDA 2004-2009, passed away this month.
  71. April 17, 2012 - The 2012 KDA Conference and Educational Symposium is scheduled for early October
  72. April 10, 2012 - Andrew Cassar joins the KDA Board of Directors
  73. March 13, 2012 - Jameson Parker joins the KDA Board of Directors
  74. February 16, 2012 - Tricky Britches performs "A Rare One' in honor of Rare Disease Day
  75. February 01, 2012 - Rare Disease Day is February 29
  76. January 08, 2012 - Information and Link to a video on Laryngospasms (dry-drowning)
  77. October 16, 2011 - KDA Fall Newsletter
  78. October 15, 2011 - KDA awards $65,000 in research grants
  79. July 24, 2011 - Orphanet Disability Project