Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

Kennedy’s Disease Knows No Boundaries...

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.

The KDA News

2013 KDA News

[Note: KDA News archives (2012 and earlier) are at the bottom of this page]

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Check back regularly for updates on KDA News
and Events, and other relevant information

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Also check out:

* Research Updates under "Promote Research"

--or by following this link: Research Updates

* And, don't forget about the KDA Store

April 28, 2013 - Published the Spring KDA Newsletter.

April 28, 2013 - Added Face, Swallowing and Lung Exercises

(Recommended by a physical therapist)

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

April 14, 2013 - The Queen Anne's Race was a success raising over $13,000.

April 05, 2013 - KDA Annual Report is available (PDF)

March 04, 2013 - Research on slowing Kennedy's Disease progression

Dr, La Spada leads a research team that has come up with a potential treatment for slowing the progression of KD

February 21, 2013 - KDA Research Grants are available for the fall of this year.

Dates, information and requirements can be found by following the above link.

February 20, 2013 - Possible Sequestration

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.