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Schinzel-Giedion Syndrome Foundation

Schinzel-Giedion Syndrome Foundation

Providing support for families caring for a child with Schinzel-Giedion Syndrome.

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Jennifer Wagner

Jennifer Wagner

Marketing & Communications

My husband and I have 4 children; Tyler, Scarlet, Fritz and Clementine. We live in Minnesota in the United States of America. Our daughter Scarlet was born with Schinzel-Giedion Syndrome in September of 2009. She lived until 7 ½ years of age in our home with skilled in-home nursing care. Our life came with many challenges, as my son Fritz additionally was born with Retinoblastoma in 2012. Despite our many ups and downs and the loss of our precious daughter, this syndrome introduced us to the most amazing children and families in the world.

My passion for this work comes from years of caring and advocating for Scarlet and other families like ours. Scarlet was not diagnosed until 3 ½ years of age and her life was full of many painful moments. My hope for this charity is that we can be a vessel to improve these all too common statistics for the sweet children facing this devastating syndrome.

My experience comes from working in non-profit helping low-income families, holding a seat on Children’s Hospitals and Clinics of Minnesota’s Family Advisory Council, being a member of Children’s of Minnesota’s Bereavement Advisory Team, and managing a Facebook page for our daughter for a larger community over the past 7 years.

Contact Jennifer

Board of Trustees

Our Board of Trustees
Our Board of Trustees

Our Trustees are all parents of children with Schinzel-Giedion Syndrome. We are all volunteers, passionately driven to raise awareness and improve the lives of children born with this rare genetic disorder.

Title
Nuala Summerfield

Founder and Chair of Trustees

My Story
Leina Zhang
Emma Hudson

Secretary

My Story
Title
Jennifer Wagner

Marketing & Communications

My Story
Title
Adrianne Woods 

Policy Making & Research

My Story
Title
Charla Andersen

Fundraising

My Story

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