The Kennedy's Disease Association's Goal is to help find a treatment or cure for Kennedy's Disease

Mission Statement

  1. Financially support and promote medical research to find a cure for Kennedy's Disease.
  2. Create a support system for those living with Kennedy's Disease.
  3. Share information about Kennedy's Disease for those who seek it.
  4. Improve Kennedy's Disease awareness in the medical community.
  5. Increase public awareness about Kennedy's Disease and its effects on families.

About the KDA

The Kennedy's Disease Association began as a concept between founders Terry Waite and Patrick Griffen in 1999 and was later incorporated in the year 2000. The Kennedy's Disease Association has always been managed and operated by an all volunteer board of directors. To view the Kennedy's Disease Association's current board of directors, click here. To learn more about the Kennedy's Disease Association and its current president, Terry Thompson, please read the Global Genes interview  for their publication, the "Rare Daily" by clicking hereIn the interview, Terry talks about the KDA's strategy, focus, and challenges as well as his management style and guiding principles. To learn more about the KDA story, click here.   


The KDA family has grown over the last twenty two years.  As of January 2022, 1,698 people in 51 countries have registered with the KDA. Of those registered: 

  • 884 men with the defective gene

  • 215 women that are carriers

  • 427 family members and friends of someone living with Kennedy's Disease

  • 212 researchers and doctors 

Articles of Incorporation and Annual Reports

The KDA is a non-profit corporation, incorporated in California on August 21, 2000. We are recognized under United States of America Internal Revenue Code 501(c)3 as a publicly supported organization as described in sections 509(a)1 and 170(b)1(A)(vi). In the United States, donations are considered tax deductible by the Internal Revenue Service, and our federal tax identification number is 77-0552005. Please see the following documents for more detailed information.



WRKennedy "I am amazed at the wonderful support that the KDA gives to the men and families affected by KD. The progress made by current research on animal models of KD and by therapeutic trials gives reason to hope that the disease that I described 40 years ago will finally be conquered." 

William R. Kennedy, M.D.