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."

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.

2009 KDA News

12/11/09 - Mighty mice: Treatment targeted to muscle improves motor neuron disease
12/9/09 - The MDA has issued a letter stating that due to the current economy, that as of January 1st 2010 they will be stopping assistance in the purchase of durable medical equipment, also transportation to MDA clinics. Please click here to read the letter. (requires Adobe reader) The letter may take a couple of minutes to load if you are on dial-up so please be patient.
12/01/09 - KDA Winter Newsletter - The KDA Winterl 2009 newsletter is now available for download. You will need the adobe viewer.
10/28/09 - Therapy Investigated for ALS May Find New Role in Kennedy's ...
10/19/09 - IGF1 might work better and more specifically in Kennedy's disease than in ALS says ... Kennedy's disease also called spinal and bulbar muscular atrophySBMA
10/19/09 - Research Update - Rescuing SBMA-Affected Muscles - Maria Pennuto
9/16/09 - Ed Meyertholen is at it again, He is running to raise funds for the KDA. He is running the San Antonio Rock and Roll Marathon.
9/10/09 - Living with Kennedy's Disease Blog - Bruce Gaughran has created a blog focused on Kennedy's Disease. Many posts (some serious and others humorous) are personal experiences, stories and thoughts about living with Kennedy's Disease. Interspersed throughout the posts are articles on Kennedy's Disease including tips on applying for Social Security-Disability, recent research, profiles of young researchers, exercise programs, tips on using mobility devices, etc. If you have a chance, take a look and see if anything sparks an interest.
9/03/09 - KDA Fall Newsletter is now available.
09/01/09 - We have added a new vendor to our on-line shopping page, Avon Products. A portion of the sales will go towards research
8/10/09 - WE NEED YOUR HELP, We need to update our e-mail database here at the KDA. please send an e-mail to This e-mail address is being protected from spambots. You need JavaScript enabled to view it and let us know your current e-mail and name so we can check it against our current list. Thank you
6/1/09 - Sean Blasko has been training for the 2009 Ironman competition. He is doing this to raise research funds for the KDA.
5/8/09 - 2009 Research Grant applications are now being accepted.
5/04/09 - The KDA XPress Spring/Summer 2009 Newsletter is now available.
4/21/09 - The KDA welcomes our newest KDA Board of Directors member Lou Tudor. Please see this link for a short bio for Lou.
02/07/09 - The KDA has added a new easy way of making donations to the KDA using Razoo - Make a credit card donation by using the SECURE SERVER "Donate Now" button on the right. Razoo is a service that processes and routes credit card payments to non-profits. Razoo is not charging any processing fees for donations
01/20/09 - Laryngospasm - The link will take you to a website that will explain the choking (dry drowing) spells that most of us with KD eperience on a regular basis. It is called Laryngospasm. There is even a short video of what is occuring.(http://www.voicedoctor.net/therapy/laryngospasm.html)
1/9/09 - Smart Exercise Guide - Part II - The below exercises were recommended by a certified Physical Therapist. Several of these exercises are designed for someone that is having difficulty walking; or feels more comfortable in a wheelchair, but can still stand and transfer without assistance. Most exercises can be modified by adding light weights and by holding a position for a longer period of time. I have personally performed all of these exercises and found them to be very helpful in maintaining and improving my strength and my balance as well as providing me with improved self-confidence. KD Smart Exercise Guide Part II (2009)
1/7/09 - Researchers Explore Self-Defense in Nerve Cells for SBMA