SGS Family Conference August 12-14th 2022
This will be a virtual event on Zoom from 12-2 pm ET / 5-7 pm UK / 6-8 pm CET
(2 hours per day over three days)
Families, other Caregivers and Health Professionals are all welcome!
Day 1: Friday 12th August (times are in Eastern Time)
12:00 – 12:30 pm Welcome and Introduction – SGS Foundation
12:30 – 1:00 pm 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, Assistant Professor in Population Health Sciences, Duke University
1:00 – 1:50 pm Understanding Cortical Visual Impairment (CVI) – Chris Russell, Teacher of the Visually Impaired (TVI), New York Deaf-Blind Collaborative
1:50 – 2:00 pm Wrap up and meeting close – SGS Foundation
Day 2: Saturday 13th August (times are in Eastern Time)
12:00 – 12:10 pm Welcome and Introduction – SGS Foundation
12:10 pm – 1:30 pm 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
1:30 pm – 1:50 pm 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
1:50 pm – 2:00 pm Wrap up and meeting close – SGS Foundation
Day 3: Sunday 14th August (times are in Eastern Time)
12:00 – 12:10 pm Welcome and Introduction – SGS Foundation
12:10 – 1:00 pm 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
1:00 – 1:30 pm 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! – SGS Foundation
1:30 – 1:50 pm 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 – SGS Foundation
1:50 pm – 2:00 pm Wrap up and meeting close – SGS Foundation