Foundation Organizes First Virtual SGS Family Conference

SGS Family Conference August 12-14^th 2022

If you didn’t make our Family Conference, you can catch up on all the video recordings below or on our YouTube channel.

To watch these talks with translated sub-titles in your own language, please watch this video for instructions on how to turn on auto-translations in YouTube.

DAY 1

Welcome remarks and introduction to The SGS Foundation – SGS Foundation Trustees

Expanding the ORCA Study – learn how YOU can get involved in this exciting research study to help us better understand communication in children with SGS – Dr Christy Zigler, PhD, Assistant Professor in Population Health Sciences, Duke University

Understanding Cortical Visual Impairment (CVI) – Chris Russell, Teacher of the Visually Impaired (TVI), New York Deaf-Blind Collaborative

Wrap up and meeting close – SGS Foundation Trustees

DAY 2

Welcome remarks – SGS Foundation Trustees

Understanding Schinzel-Giedion Syndrome: from the genetics to the clinical symptoms – Dr Jessica Duis MD , Pediatric Geneticist and Special Care Pediatrician, Children’s Hospital Colorado

SGS Disease Concept Study – learn how YOU can get involved in this exciting research to understand which symptoms of SGS are most important to you and your child! – Anna Fangmeier, Master of Genetics Counselling student, Vanderbilt University

Wrap up and meeting close – SGS Foundation Trustees

DAY 3

Welcome remarks – SGS Foundation Trustees

Learn how collecting health information about our children in the SGS patient registry will help us to work towards developing new life-changing treatments for SGS – Dr Terry Jo Bichell PhD, Founder and Chair of COMBINEDBrain

Update on the SGS Patient Registry: watch a live walk-through of the SGS Patient Registry on the Matrix platform and learn how to sign up for a 1:1 session where we can walk you through the registry enrolment and consenting process to get YOU started! – Nuala Summerfield, SGS Foundation

What’s next? An update on the Foundation’s strategic plan for the next 12 months and beyond for research, raising awareness and supporting families – Emma Hudson and Nuala Summerfield, SGS Foundation

Wrap up and meeting close – SGS Foundation Trustees