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, not even the MDA.

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. The KDA was incorporate in August 2000 and received their 501(c)3 status in November of that year.

Today, the KDA has grown to over 700 associates from thirty-three countries. 550 of the associates have the defective gene. Over the past 4 years, the KDA awarded $125,000 in research grants through the generous donations and support of their associates.