Board of Trustees

Meet our Trustees advocating for children with Schinzel-Giedion Syndrome

In this photo: Xavier

Our Board of Trustees

Our Board is made up of parents of children with Schinzel-Giedion Syndrome, as well as passionate supporters of the cause.

We are all volunteers, working tirelessly to raise awareness and improve the lives of children born with this rare genetic disorder.

Nuala Summerfield

Founder and Chair of Trustees

My Story

Dana Bradley

Community Engagement & Clinical Research

My Story

Carina Olsen

Social Media

My Story

Aleksandra Blagunovski

Fundraising

My Story

Carina Olsen

Social Media

My Story

Emma Hudson

Secretary

My Story

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Schinzel-Giedion Syndrome Foundation

The Schinzel-Giedion Syndrome Foundation is a registered UK charity (Registered Charity Number 1186327) established in 2019 by an international group of parents of children with Schinzel-Giedion Syndrome (SGS). Our foundation has been created to represent children with SGS and their families living all around the world.

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