SGS Family Conference August 12-14th 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.


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

Want to learn more?

Download the CVI resources provided by Chris Russell that he mentions in his talk.

CVI Fact Sheet


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

Want to get involved?

If you are a parent or caregiver of a child with SGS, email us to sign up to participate in the SGS Disease Concept Study!

Email Us


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

Want to get involved?

Sign up to join the SGS Patient Registry or email us to arrange a 1:1 Zoom walk through.

Email Us

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


Read more about our fantastic Speakers here.


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