Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Every day parents-to-be wonder whether their child will be born with this DNA defect"

Our Focus Remains on Research, Education and Support

The Kennedy’s Disease Association has worked to educate others about this lesser-known disease and to support clinical research efforts. We distributed information to more than 10,000 neurologists to help them recognize clinical signs and symptoms of Kennedy’s Disease.

Will my child be born with this DNA defect?

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. We are searching for available foundation grants, but the process is lengthy. We need researchers to continue their work, and it is only the KDA that makes funding this disease a priority.

Kennedy’s Disease Knows No Boundaries...

It is passed on from generation to generation in families worldwide. Males generally inherit the disease symptoms and females are the carriers. The defect is in the ‘X’ Chromosome that makes testosterone almost a poison to his body.

What is Kennedy's Disease?

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. However, onset has also been reported as early as in the teens and as late as the 60s.

What's New

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

Check Out:

Research Updates

January 31, 2012 - Skin transformed into brain cells (and potentially motor neurons)
January 05, 2012 - How Muscle Growth is Triggered by Exercise
December 09, 2011 - SIRT1 Modulates Aggregation and Toxicity through Deacetylation of the Androgen Receptor in Cell Models of SBMA
December 02, 2011 - Molecular Mechanisms of Androgen Action – A Historical Perspective
November 28, 2011 - Videos of research presentations at the 2011 KDA Annual Conference
November 01, 2011 - Macroautophagy Is Regulated by the UPR–Mediator CHOP and Accentuates the Phenotype of SBMA Mice
October 01, 2011 - Testosterone Treatment Fails to Accelerate Disease in Mouse Models
September 29, 2011 - NIH to make a mightier mouse resource for understanding disease
June 10, 2011 - Effect of Functional Exercise in Patients with Spinal Bulbar Muscular Atropy

Clinical Trial Updates

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

KDA News

February 16, 2012 - Tricky Britches performs "A Rare One' in honor of Rare Disease Day
February 01, 2012 - Rare Disease Day is February 29
January 08, 2012 - Information and Link to a video on Laryngospasms (dry-drowning)
October 16, 2011 - KDA Fall Newsletter
October 15, 2011 - KDA awards $65,000 in research grants
July 24, 2011 - Orphanet Disability Project

KDA Store

KDA Polo Shirts (added May, 2011)
KDA Muscle Shirts (added September, 2011)
KDA Cookbooks - 2011 Edition - Volume II (added October, 2011)

Other Changes:

February 09, 2012 - The 2011 KDA Annual Report was published.
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.
January, 2012 - Added new chat room transcripts
December 27, 2011 - New North Carolina and Tennessee doctors added to doctors familiar with Kennedy's Disease.
October, November & December, 2011 - Several chat room transcripts added including Ed Meyertholen's research update from the KDA Conference
November 23, 2011 - Updated KDA's Frequently Asked Questions