Learn, Network and Bond!
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.
Registration and Child/Young Adult Activities fees range from $135 – $155 per person.
Get Medical Information Directly From the Experts
At the conference new information is shared with families by experts in the field who have access to the most up-to-date information and international expertise. Some of this information may not be available in the medical literature at the current time. Dr. Trevor Cole (United Kingdom), Ms. Rebecca Anderson (USA) and Dr. G. Bradley Schaefer (USA), are three of the the world’s leading authorities on Sotos Syndrome and other overgrowth disorders and attend the conference every year.
Free Private Consultation
Every family at the conference is given a private individual consultation with one of the expert doctors. The visits are non-intrusive and free of charge to all attendees. Returning families have their appointments on Friday afternoon. Families attending the conference for the first time have their appointments on Sunday afternoon.
Friday Evening Dinner and Entertainment
The conference begins on Friday evening with dinner and entertainment for the whole family. For many families, this is the first time they have ever met another person with Sotos Syndrome and it can be a huge relief to finally see that they are not alone. We make the evening relaxed and fun for all ages to allow families to become acquainted and renew friendships.
During the Friday evening social, silent auction items will be on display for all to bid upon. Our silent auction features items and services donated by our member families and friends of the SSSA. Proceeds from the silent auction are used to sustain the Carol Richey Conference Assistance Fund which provides assistance to families in need of financial aid to attend their first conference.
Also on display will be our “Brag-Table”. Parents are encouraged to bring trophies, medals or photo albums to help others see just how far your little one has come or how much CAN be accomplished. Drop off your items during registration on Friday afternoon and collect them at the end of our dinner and entertainment.
Saturday and Sunday Workshops
Adults spend Saturday morning and afternoon and Sunday morning attending a variety of workshops. In addition to the Sotos Syndrome expert doctors, we also assemble a variety of local speakers on topics of interest to families dealing with Sotos Syndrome. We always aim to have three tracks of speakers with one track aimed at issues with younger children, a second track aimed at issues for older children or adults and a third track exclusively for young adults with Sotos syndrome. Childcare Activities are provided for the children and young adults that need supervision and is included in your registration.
Sample topics from over the years include:
- Sotos 101: Overview of Sotos Syndrome
- Early Childhood Intervention and Inclusion
- Speech Therapy
- Occupational Therapy
- IEP/IPP Management
- Celebrating Your Child’s Strengths
- Sexuality: It’s (Never) Too Soon
- Will and Estate Planning
- Choosing a College