Kennedys Disease Association

Kennedy's Disease (Spinal Bulbar Muscular Atrophy) knows no boundaries. Every few days a baby is born with this DNA defect.

Males inherit the disease symptoms and females are the carriers. The defect is in the ‘X' Chromosome and it makes testosterone almost a poison in his body. Since there is no treatment for this defect, boys will grow up not knowing when the disease will begin to attack his motor neurons and muscles. Often it begins with painful cramping and uncontrollable muscle spasms. Over time it will attack most of his muscles often making it impossible to walk and difficult to even swallow liquids.

The KDA is an all-volunteer organization where 90¢ of every dollar donated goes towards research and education. The KDA has grown to over a 1,000 associates of which 78 are doctors and researchers. Over the past eight years, the KDA awarded $345,000 in research grants.

The KDA is recognized under United States of America Internal Revenue Code 501(c)3 as a publicly supported organization.

THE KDA MISSION

1) Financially support and promote medical research to find a cure

2) Improve awareness in the medical community and with the general public

3) Create a support system for those living with Kennedy's Disease

4) Share information for those who seek it.

THE KDA STORY

The concept for the Kennedy's Disease Association (KDA) began in 1999 after Susanne and Terry Waite and Patrick Griffin attended the Families of Spinal Muscular Atrophy Conference. At the time, there was no organization supporting Kennedy's Disease. Upon returning home the Waites talked with Mr. Griffin and agreed to email everyone on their mailing lists asking for their support in starting up an association.

Audrey Lewis, one of the FSMA founders, supported the start-up by mentoring the Waites through the beginning stages of the startup. The KDA was incorporated in August 2000 and received their 501(c)3 status that same year.

Please help us find a cure!