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.

Testimonials

Please let us know if you would like to share
your experience with the KDA with others.

Write to us at: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

"I have only recently been diagnosed with Kennedy's Disease (mis-diagnosed Muscular Dystrophy in the 1980s) and I went searching the internet trying to find out what I could. I quickly found your site and am having a great time informing myself!!!
Thank you for being in cyberspace to meet me at a time of need."

-- Kevin Brennan, Australia

"I thank God there are so many who will share their story to give others hope! My brother was diagnosed with SMA in 1996 and today after a subsequent visit to the doc, they now believe his disease is Kennedy's. I am relieved to know that it's similar to the SMA diagnosis. This younger brother of mine is a very special person and I'd like to have him around for awhile. Thanks to all who have shared their stories."

-- Sharon Durda, Ohio, USA

"My husband was diagnosed with KD last year. He is coping with the thought of having to use a wheelchair in the future. I think this is a good site to have, because it has some encouraging words. Thank you for having it available."

-- Julie Nolte, Minnesota, USA

"My father passed away on September 10, 2002 from respiratory distress, brought on by advanced KD and lupus. I miss him very much. He was in the Ottawa Civic Hospital for almost a month before passing, and almost all of the nurses and doctors did not know about Kennedy's Disease. I want to thank the creators of this website. I referred them here."

-- Elisse Meshake, Ontario, Canada

"Finally diagnosed with KD after 3 1/2 years of testing. Thanks to a wonderful Neurologist and General MD who were equally driven to determine my ailment. That was 4 years ago, and am continuing to walk (slowly) and take care of chores around the house. Thanks to a wonderful family and stubbornness on my part.. I might be slowing down, but not giving up .... Am glad to see finally information being made available about this disease.. THANKS for the website."

-- Robert Antolin, California, USA

"I am very glad to see that you have added the personal stories, they are a great help. They give an outlook on what to expect with such a disease. It makes me proud to see people who are willing to express and share their stories with the world, keep up the good work!"

-- Jennifer Cullen, Ontario, Canada