Did you know, there is only one state in the US that has a Cockayne Syndrome (CS) Awareness month? Well, that state is New Jersey and that month is July. What better month to launch our foundation than this?

Join our founder all month as we journey through our first fundraiser and the launch of our nonprofit organization. Each day, she well briefly discuss various topics such as: CS, life as a mother to a son who has CS, what inspired the birth of our organization, the significance of our mission, what we plan to do now, and our vision for the future.... all while getting her steps in... this indeed will be a challenge.

Our mission is to provide diagnosis specific resources and information to children with Cockayne Syndrome and their families so they may experience life to its fullest. When raising a child with a rare disease, symptom management presents a unique barrier for families in reaching that goal. Despite medicaid eligibility and state programs for disabled and/or medically fragile children, families still carry a heavy financial burden to ensure their child's symptoms are well managed. Our first program, The Family Resource Program, has been developed in an effort to alleviate some of this financial burden.

With your help, the Family Resource Program will become a reality.

The Cockayne Syndrome Foundation Inc. is a 501(c)(3) nonprofit organization. All donations are tax-deductible. For more on our work, visit our website at www.thecockaynesyndromefoundation.org. To send donations offline, please contact info@thecockaynesyndromefoundation.org. For checks, please address them to The Cockayne Syndrome Foundation Inc., and mail them to:

The Cockayne Syndrome Foundation Inc.

P.O. Box 1765

Plattsburgh, NY 12901

Thank you for your support, and we'll see you on the trail!

Launch and Walk Challenge

We are launching JULY 1, 2024! We are an all-volunteer, tax exempt 501(c)(3) organization. We are the FIRST group in the US that supplies products to families affected by Cockayne Syndrome as well as resources and education. Scroll for more info!! :)

Team Members