I became aware of Schinzel-Giedion Syndrome in 2013 when my youngest daughter, Avery, was six weeks old. From that time on, I tried to learn as much about the syndrome as I could. It wasn’t until I found other SGS families around the world that I started to know what everyday life would be like with my daughter. The SGS family community helped me feel like I wasn’t alone in this situation. A year before Avery passed away, my family and I were able to meet up with other SGS families at a retreat in Wisconsin, USA. Although having a child with this syndrome has been hard on me and my family, so many beautiful experiences have come from it. Going through this has changed so many things for us and created a bond that has helped with the grief of the loss of a child.
I live in the state of Utah in the United States with my husband Jade and children, McKenna and River. We love spending time outside exploring the mountains around us. I am an educator, teaching fifth-grade students in a public elementary school. I love to inspire children to try new things and learn.
I am serving as the Fundraising Chair of the SGS Foundation. I hope that through this foundation, people will become more aware of SGS. Another hope I have is that more families can feel a sense of community as they struggle with this very rare diagnosis.
“Your life is your message to the world. Make sure it’s inspiring.”
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.
Founder and Chair of Trustees
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