Overview

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.

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.

Meet one-on-one with medical professionals in a private setting. These meetings are by appointment and take place on Friday afternoon, July 11, 2025, and on Sunday afternoon, July 13, 2025.

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 funfor 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.

Also planned will be networking activities for you to meet other families, a DJ and dance floor, along with a photo booth to capture your memories from the event.

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.