top of page
Our Team.
Our organization is comprised of three women on a mission! We are an all-volunteer team united by our love for Ronin and our drive to improve the lives of children like him and their families.
Geana Dyer
Founder, Development Director
Hello! I am the founder of The Cockayne Syndrome Foundation, a nurse, a veteran, and - most importantly - Ronin’s mom. Founding The Cockayne Syndrome 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 a veteran, I have experience leading teams on successful missions. As Ronin’s mom, I have the knowledge of how heavily this disease weighs on the daily lives of families that endure it. With this foundation, I hope to complete our mission of making life a little more manageable so families like mine have more opportunities to enjoy the short time they have with their loved one.
Justus Brassard
Director of Communication, Grant Writer
After graduating from the State University of Plattsburgh New York in May of 2024, I began this journey with my Aunt to create a nonprofit for children like my cousin, Ronin. Alongside this work, I am also a caregiver for Ronin. I am able to provide a helping hand to his parents in their daily lives by tending to him a few hours each week. The hours I spend with him have helped me to learn the details of what life is like with CS which helps me with the work I do here for the Cockayne Syndrome Foundation.
Demi Keliihananui
Advocacy Director, Secretary
I am a junior at Penn State University studying English Literature and French. When my Aunt Geana approached me with her idea for a non-profit to help improve the quality of life for Ronin and other children with CS, I jumped at the opportunity to help her get this organization off the ground. As a student deeply invested in the impact of writing on the world, I knew my most valuable contribution to our team would be through my words. In addition to serving as the secretary, I took on the task of crafting and disseminating our message to various publications, both within our county and beyond, to raise awareness for our cause.
Interested in joining our team?
Contact us to learn more!
bottom of page