• ORGANIZATION PROFILE
  • Share and Care Cockayne Syndrome Network Share and Care Cockayne Syndrome Network

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Mission Statement

Helping children with Cockayne syndrome and their families improve their quality of life through support, education and research.

Description

We have been connecting families who have children with a rare genetic terminal illness called Cockayne syndrome (CS). The brief description is, CS causes premature aging (progeria). It is a neurodegenerative disease that can begin at birth or a few years if age, the onset of the disease shortens the lifespan of the child affected some (early onset) only live to an average of 3-5 years. A later onset can allow the child to live into their late teens, twenties, and a few even older with a later onset who living with CS who are in their 40's and 50's. The people affected with CS are so sweet and are very small in stature (a form of dwarfism), and they are very friendly and outgoing. They are aware and cognitive of their differences. Share & Care started in 1981 by connecting families through mail and telephone. In 1998 we began having retreats and inviting researchers and medical professionals to help the children. CS if very rare and difficult to diagnose. We need help getting awareness to help us find children who are living with CS, yet undiagnosed. We have drug trials and research for them to particpate in but more importantly we have a great support group we connect families online through social media and need volunteers to help us grow awareness and campaigns through Newsletters, Brochures, Website, telephone and online support and conference planning.

Website

http://www.cockaynesyndrome.org

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