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2012 Butterfly Walk NY- Butterfly walk for Hannah C

2012 Butterfly Walk NY- Butterfly walk for Hannah C

 

Cockayne Syndrome (CS) is a rare genetic disorder characterized by poor growth, microcephaly, premature aging, sensitivity to sunlight, moderate to profound developmental and neurological delays, and a shortened lifespan. At this time there is no treatment available for CS. There are only 200-300 children in the World with this rare genetic syndrome.

Share & Care’s mission is helping children with Cockayne Syndrome and their families improve their quality of life through support, education and research. Share & Care is an all volunteer organization -- no paid employees