The Cockayne Syndrome (CS) Foundation, established in May 2024, is a 501(c)(3) nonprofit organization run entirely by volunteers. We provide resources, information, and supplies to children with Cockayne Syndrome (CS) and their families so they may experience life to its fullest. ​
CS is a progressive neurodegenerative disorder, meaning that these children experience rapid aging and shortened life expectancy - gradually lose their ability to walk, talk, see, hear, and eat. As they get older, the disease overtakes their bodies, but that doesn’t mean that it should overtake their lives.
What sets our organization apart is our commitment to alleviating the financial burden of families impacted by this rare and terminal genetic disease. We are the only organization in the US dedicated to this mission for these families.
Our primary goal is to improve the lives of children with Cockayne Syndrome right now, in their day-to-day symptom management through our Family Resource Program. As our organization grows, we envision supporting CS families with adaptive technologies, medical expenses, travel accommodations, and funding current research and future clinical trials.
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Our Mission:
To support families affected by Cockayne Syndrome by offering essential resources and supplies to improve their quality of life and ease the financial burden of ensuring their children's comfort.
Our Vision:
To create a world where every family affected by Cockayne Syndrome has the support and resources they need to thrive, free from financial worry and fully empowered to enhance their children's quality of life.