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Who We Are


The photo above is Co-Founder & President Emerita, Susanne Waite, in front of the historic Mel's Diner with the car used in the KDA's Great Road Trip fundraiser

Our Mission

The Kennedy's Disease Association's Goal is to help find a treatment or cure for Kennedy's Disease. Our Mission Statement is to fiancially support and promote medical research to find a cure for Kennedy's Disease. Create a support system for those living with Kennedy's Disease. Share information about Kennedy's Disease for those who seek it. Improve Kennedy's Disease awareness in the medical community and Increase public awareness about Kennedy's Disease and its effects on families. 

The KDA Story

The concept for the Kennedy's Disease Association began in 1999 after Susanne and Terry Waite and Patrick Griffin attended the Families of Spinal Muscular Atrophy (FSMA) Conference.  The conference had about 3,000 people attending including six who were living with Kennedy's Disease (KD).  The six were invited to attend a special breakout session focused on Kennedy's Disease.  KD is not a disease that the FSMA normally focused on, but they did put a breakout together for those living with KD.  At the time, there was no organization supporting Kennedy's Disease.

Terry and Susane.

Before the conference, the Waites and Patrick Griffin both had developed their own web sites and were trying to get the word out about Kennedy's Disease.  Both also had designs to start a non-profit organization focused on KD. At the end of the Families of SMA conference, the six living with KD were able to spend some time with twenty-two doctors and researchers from all over the world including Dr. La Spada and Dr. Merry.  The six were so excited because they were able to meet the people who were working to find a treatment and cure for KD.  During the meeting, Susanne asked Dr. La Spada if they had more money, could their research move along any faster.  He said "yes."  Susanne then asked if a non-profit organization was formed for Kennedy's Disease, would they support it.  Again, the answer was "yes."

When the Waites returned home, they collected all the email addresses in their web site's guest book.  There were over 100 names of those with KD or their family members.  The Waites talked with Patrick Griffin and they agreed to join forces.  Patrick sent all of his contacts and the Waites combined the two into one mailing list.  The Waites emailed everyone on the combined list telling them what they were trying to do and asking for their support.  They also asked if anyone knew an attorney who would volunteer to help them incorporate and apply for their non-profit 501(c)3 certification.  Paul Liu provided a name of a very large and internationally respected law firm.  The firm agreed to help pro-bono.  The Waites did have to come up with $700.00 to pay for the processing fees and other costs associated with the incorporation.

Audrey Lewis, one of the founders of FSMA, once again supported the start-up of the KDA.  She helped mentor the Waites through the beginning stages of the association.  The KDA was incorporated in August 2000 and received their 501(c)3 status in November of that year.

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Annual Reports, Articles of Incorporation, & IRS Determination Letters

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.

KDA Annual Reports

Note: Annual Reports are PDF documents

Articles of Incorporation & IRS Determination Letters
Tax Form 990