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Our Team.
We are an all-volunteer team united by our love for Ronin and our drive to improve the lives of children like him and families like ours.
Hello! I am the founder of The Cockayne Syndrome Foundation, a registered nurse by trade, and Ronin's mom. Starting this foundation was inspired by Jayne Hughes, founder of Amy and Friends. She, too, had a child with CS. What she has done in the United Kingdom for our community is beyond remarkable and I can only hope that one day our foundation can be half of what her organization has become. My experience with non-profits is minimal, but my drive to improve the lives of families and children affected by this disease is enormous. As a nurse, I understand the complexities of diseases such as Cockayne Syndrome. As Ronin’s mom, I have the knowledge of how heavily this disease weighs on the daily lives of families that endure it.
Geana Dyer
Hi there! I met Geana about two years ago at a support group for parents with medically complex children and found out our sons were in the same class! Such a small world. We've bonded over our "zebra mom" lives. I'm kind of like an "all other duties assigned" volunteer and help wherever Geana needs it. I started volunteering with TCSF because I believe in this non-profit and what we do for these kids.
Jamie Dupell
Interested in joining our team?
Contact us to learn more!
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