Kennedy's Disease Association

"Our Focus Remains on Research, Education and Support"

See what has been changed, added or updated since your last visit ...

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What's New

1. Research Updates
2. Clinical Trial Updates
3. KDA News
4. KDA Store
5. Other News

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• Research Updates

1. March 04, 2013 - Research on slowing Kennedy's Disease progression
2. December 16, 2012 - One of the Kennedy's Disease researchers sent the KDA this Message of Hope.
3. September 12, 2012 - The KDA awarded a $25,000 research grant to Jamie A. Johansen of Central Michigan University
4. September 11, 2012 - IGF-1 continues to show promise (update on ongoing research)
5. July 28, 2012 - Clinical Trial information from the University of California
6. March 26, 2012 - Research grants are available for 2012
7. January 31, 2012 - Skin transformed into brain cells (and potentially motor neurons)
8. January 05, 2012 - How Muscle Growth is Triggered by Exercise
9. December 09, 2011 - SIRT1 Modulates Aggregation and Toxicity through Deacetylation of the Androgen Receptor in Cell Models of SBMA
10. December 02, 2011 - Molecular Mechanisms of Androgen Action – A Historical Perspective
11. November 28, 2011 - Videos of research presentations at the 2011 KDA Annual Conference
12. November 01, 2011 - Macroautophagy Is Regulated by the UPR–Mediator CHOP and Accentuates the Phenotype of SBMA Mice
13. October 01, 2011 - Testosterone Treatment Fails to Accelerate Disease in Mouse Models
14. September 29, 2011 - NIH to make a mightier mouse resource for understanding disease
15. June 10, 2011 - Effect of Functional Exercise in Patients with Spinal Bulbar Muscular Atropy

• Clinical Trial Updates

1. June 10, 2011 - Clinical Research Study on Kennedy’s Disease

• KDA News

1. April 14, 2013 - The Queen Anne's Race was a success raising over $13,000.
2. April 05, 2013 - KDA Annual Report is available (PDF)
3. February 21, 2013 - KDA Research Grants are available for the fall of 2013.
4. January 12, 2013 - Support the 1st Annual Queen Anne's Race to end Kennedy's Disease on April 7th.
5. December 10, 2012 - Team - Great Britain has their own section of the KDA website and the KDA Forum.
6. November 23, 2012 - KDA's Winter Newsletter is now available for download.
7. November 13, 2012 - Robert Behymer joins the KDA Board of Directors and assumes the responsibilities for fund raising.
8. October 15, 2012 - Do you want to hold a Golf Fund Raising Event, but don't know how.  There is help available!
9. October 01, 2012 - The KDA Golf Tournament team raised $18,000 this year.  Thank you team!
10. 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.
11. July 20, 2912 - The 2012 KDA Golf Tournament is scheduled for September 22.  Please show your support.
12. July 12, 2012 - About 3:57 today the website had its one millionth visitor.  This is quite the milestone for the KDA.
13. June 21, 2012 - Added additional information on the 2011 KDA golf tournament.  It 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.
14. May 16, 2012 - The Spring KDA Newsletter is now avalable
15. April 23, 2012 - Ron Wiker, Vice President of the KDA 2004-2009, passed away this month.
16. April 17, 2012 - The 2012 KDA Conference and Educational Symposium is scheduled for early October
17. April 10, 2012 - Andrew Cassar joins the KDA Board of Directors
18. March 13, 2012 - Jameson Parker joins the KDA Board of Directors
19. February 16, 2012 - Tricky Britches performs "A Rare One' in honor of Rare Disease Day
20. February 01, 2012 - Rare Disease Day is February 29
21. January 08, 2012 - Information and Link to a video on Laryngospasms (dry-drowning)
22. October 16, 2011 - KDA Fall Newsletter
23. October 15, 2011 - KDA awards $65,000 in research grants
24. July 24, 2011 - Orphanet Disability Project

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• KDA Store

1. KDA WordCloud Cups are now available (added August 02, 2012)
2. "Back on Track" CD (added February 27, 2012) - By Ronnie Upton and Steve Jinks - All proceeds benefit the KDA
3. KDA Polo Shirts  (added May, 2011)
4. KDA Muscle Shirts (added September, 2011)
5. KDA Cookbooks - 2011 Edition - Volume II (added October, 2011)

• Other News

1. April 28, 2013 - Published the Spring KDA Newsletter.
2. April 28, 2013 - Added Face, Swallowing and Lung Exercises that were recommended by a physical therapist.
3. 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
4. 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.
5. 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)
6. February 09, 2012 - The 2011 KDA Annual Report was published.
7. 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.
8. January, 2012 - Added new chat room transcripts
9. December 27, 2011 - New North Carolina and Tennessee doctors added to doctors familiar with Kennedy's Disease.
10. October, November & December, 2011 - Several chat room transcripts added including Ed Meyertholen's research update from the KDA Conference
11. November 23, 2011 - Updated KDA's Frequently Asked Questions