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What we do
We are an all-volunteer 501(c)(3) nonprofit organization providing symptom-specific supplies and information to children with Cockayne Syndrome and their families so they may experience life to its fullest.
We are the first organization in the United States with the mission to alleviate financial burden of caring for children with CS and TTD.
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These are rare and challenging diseases that affect children's development and overall health.
Many symptoms require items and supplies that are not prescription-based, covered by insurance, or obtainable through other programs offered through state services available for medically fragile children.
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This is where we step in.
We are CURRENTLY ENROLLING families into out Family Resource Program. As we grow, we will add more programs.
In addition to our programs, we aim to provide up-to-date resources, community groups, research updates to families affected by CS and TTD (and anyone else who may have an interest in these disorders.
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