Organized in 1988, the Sotos Syndrome Support Association (SSSA) is made up of families, physicians, genetic counselors, and health care agencies throughout the United States and the world. The SSSA is a nonprofit organization which is incorporated and run completely by volunteers. The SSSA is a Member of the National Organization of Rare Disorders (NORD).
The Sotos Syndrome Support Association holds a conference one weekend every summer. Activities take place from Friday afternoon through Sunday afternoon. Families and professionals come from all over the world to learn, network and bond with one another. We combine a program of speakers with social events for the whole family to educate and inspire families on their journey with Sotos Syndrome.
Dr. Trevor Cole (United Kingdom), Ms. Rebecca Anderson (USA) and Dr. G. Bradley Schaefer (USA), are three of the world’s leading authorities on Sotos Syndrome and other overgrowth disorders. They attend the conference every year giving very popular lectures on the most up-to-date information about Sotos Syndrome.
Sue and Mike Jennings hosted a record 300+ registrants at Disney’s Coronado Springs Resort at WDW Orlando. Specialist, testimonials and lots of friends gathered from July 9-13, 2015 for fun, food and a little golf. Oh, and of course a meet and greet with a host of characters including Donald Duck and Mickey and Minnie Mouse.
Watch the video from the conference below: