April 14th 2023, we held Australia’s first ever Sotos Syndrome Conference.

Thanks for all of those who attended, we have sent through a survey to capture your feedback and we hope to run these regularly. 

We will make the recordings available for those who register and paid members. This will take a bit of time however so please be patient.

When we spoke to our community they told us they wanted a conference so they could connect with others with Sotos Syndrome and their families, plus they could learn more about Sotos Syndrome. This became the inspiration for our theme – Connect and Learn.

Our keynote speaker was Dr Bradley Shaefer.
He is one of the world’s leading authorities on Sotos Syndrome and other overgrowth disorders. He is also a Professor of Genetics and Pediatrics at University of Arkansas for Medical Sciences, Arkansas Children’s Northwest. 

Melanie Dimmitt, Author of The Special Book and The NDIS Podcast, was also one of our keynote speakers who talked about connection and ran an activity to help families to connect.

Our 3rd and final guest speaker was Lauren West MS, CCC-SLP. She is a speech-language pathologist for the Omaha Public School system in Omaha, Nebraska. In her ten years there she has served both the middle school and early intervention home-based populations. Lauren has had the opportunity to attend SSSA conferences as a child, as the daughter of a clinical geneticist. Currently she serves as a member of the SSSA medical advisory board. She has a specific interest in and knowledge of the speech, language, and communication characteristics of individuals with Sotos, and a love for working with Sotos individuals and their families. She will be talking about speak and language and Sotos Syndrome. 

Around 10 people zoomed into the conference and about 25-30 attended in person.

Registration fees were as follows:
$15 Adults, $5 children 3+years old
Family or 4 + tickets $35 cap (any tickets over 3 is free) Children under 3 free, but parent must provide care.
No group discounts.
No early bird discounts.

View the full Sotos Syndrome Conference Agenda here