Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I am glad to finally see information being made available about this disease.. THANKS for the website"



Welcome to the Family

Working together to find a cure

Thank you for visiting the Kennedy's Disease Association (KDA) website. We are a non-profit corporation staffed by volunteers, all of whom are Kennedy's Disease patients, carriers, spouses, caregivers, and family members or friends. The KDA's mission is to:

  • Financially support Kennedy's Disease research and education
  • Share information about Kennedy's Disease with those who seek it
  • Create a support system for those living with Kennedy's Disease
  • Increase public awareness of Kennedy's Disease and its effect upon families
  • Improve the awareness of Kennedy's Disease in the medical community

Comprehensive Website: The KDA has developed a web site to help share information in a cost-efficient and effective way. The website's link is: We are constantly updating relevant information as it becomes available. Please visit the First Time Visitor page to become familiar with some of the information that is on the website. There is also a "Living with Kennedy's Disease" blog where several hundred articles of possible interest are posted. Shown below are links to other information and services including: "Frequently Asked Questions" concerning Kennedy's Disease and KDA newsletters.

KDA Chat Room: We host a Chat Room on the first Saturday of each month at 10:30 AM Eastern Time. Several times a year doctors, researchers and specialists are invited to the chat room to discuss the latest research, health issues, and quality of life topics. Chat room topics and guests are posted at: Chat Room Schedule. Transcripts of previous chats can be found at: Recent Chat Transcripts.

KDA Forum: The KDA has an open forum for those interested in posting questions, providing answers, or sharing stories and information. You can find out more about the forum at: KDA Forum.

Contact the KDA: You can call, email or write the KDA by following this link: Contact the KDA 

Network with others living with Kennedy's Disease: We also offer a networking service for all KDA Associates. 

Email Updates Occasionally, the KDA will send out emails that contain research and clinical trial updates, Association news, notifications of pending chat room discussions, and annual conference information. If, at any time, you do not want to receive further emails from the KDA, just click on the 'Safe Unsubscribe' link at the bottom of the email. Your name will be immediately removed from our distribution list.

About the KDA: The Kennedy's Disease Association is a non-profit corporation, incorporated in California on August 21, 2000. We are recognized under United States Internal Revenue Code 501(c)3 as a publicly supported organization as described in sections 509 (a) (1) and 170 (b) (1) (A) (vi). Donations are considered tax deductible by the I.R.S. in the United States. Click here to see how your donations are used

Note: You will need to Register to access the KDA Chat Room:  Fill in the Registration form using your email address, personal user name and password. The system will send you a confirmation email that looks like this:

"Thank you for registering at the Kennedy's DIsease Association Your account is created and must be activated before you can use it. To activate the account click on the following link or copy-paste it in your browser:"

Click on the link in the email to authenticate you are not a SPAMMER. Once you have activated the account, you can log In using the LOGIN form You now have access to the Chat Room on the website.

Note: If you don't receive an email from the KDA withing a matter of minutes, please check your SPAM or Blocked emails folder. It might be in there. There are also a few service providers that view the authentication link as SPAM and don't even send it to you. If you don't receive the email, Contact the KDA and ask to be authenticated.

We want to hear from you: Welcome to the KDA Family. If we can ever be of service, please do not hesitate to Contact Us.


The Kennedy's Disease Association