Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The site is essential for a source for the general public, whenever one encounters the diagnosis of Kennedy's Disease and has no idea what that might be."

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.

Support Groups

Stepping out of the Shadows - KDA Support Groups

Those who actually exhibit symptoms of Kennedy's Disease need support and understanding, as do those who love them. Many issues may need to be addressed that others who do not live with Kennedy's Disease may not understand or know how to help answer. That's why the support groups, led by volunteers were established. These groups provide a vehicle for those seeking help, guidance and support from others who might be going through similar experiences. Together, there is much knowledge to be shared, and experience has been the teacher for all of us.

Join with us to share, support, maybe find solutions and/or some peace of mind knowing that you are not alone in dealing with challenges while standing in the shadows of Kennedy's Disease.

Wives and Significant Others

Paula Goynes, wife of a Mike Goynes, who has Kennedy's Disease, has volunteered to coordinate the Wives/Significant Others' support group.

Paula volunteered to take the position of Significant Others Support Coordinator because she remembers the fears, confusion, and the sense of helplessness, that she dealt with in the weeks and months after she and Mike realized that a simple, annual physical exam had changed their lives forever.

To join this group, e-mail This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Carriers

The KDA is currently seeking a volunteer to coordinate this support group. To join this group, or, if you are interested in leading this group, please contact the KDA at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Individuals Exhibiting Symptoms

For individuals exhibiting symptoms you can contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it for support

Family Members and Friends

The KDA is currently seeking a volunteer to coordinate this group. To join this group, or, if you interested in leading this group, please contact the KDA at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .