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.
Geana Dyer
Justus Brassard
Demi Keliihananui
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.
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.
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.
Board Members
Kathy Ryan - Retired Special Education Teacher + Local Fundraiser
Hunter Saklad - Executive VP and Chief Supply Chain Officer, Sleep Number
Ashley Porter - Care Manager/Care Manager Supervisor, Children’s Health Network, LLC
Geana Dyer - Registered Nurse, Ronin's Mom, Founder
Medical Advisory Board
Katherine Anderson, MD - Clinical Geneticist, UVMMC
Kaitlin Ostrander, MD - Hospice and Palliative Medicine, Pediatrics - Hospital Medicine
Lisa Rasmussen, MD - Hospice and Palliative Medicine, Neurology with Special Qualifications in Child Neurology, Neurology
Christina A. Pacak, PhD - Translational Molecular Biologist and Associate Professor at the University of Minnesota