SOTOS SYNDROME SUPPORT ASSOCIATION

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 501(c)(3) organization which is incorporated in the state of Missouri and run completely by volunteers.

To answer questions such as “How do I join?” or “What did you do when your child did this?”, the SSSA offers a toll-free phone line 888-246-SSSA (7772). This rings into the home of a veteran member and parent of an individual with the syndrome.

To facilitate communication, an email newsletter is sent out to all SSSA members who are current with their dues. Inside, readers will find tips and stories from members, interesting articles from experts and professionals and association business.

To educate family members, doctors, therapists and teachers about Sotos syndrome, the SSSA sells the book Sotos Syndrome: A Handbook for Families and the DVD Sotos Syndrome: A Journey from Diagnosis through Life. The handbook is available in English and Spanish while the DVD is in English with subtitles in Spanish, French and Italian.

The majority of the SSSA’s focus is spent on the Annual Conference. One weekend each summer over 250 people get together from Friday until Sunday to learn, network and bond with one another. A program of speakers, along with childcare and social events for the entire family are offered. Typically 60 – 80 families attend the conference from around the world.