We are looking for writers to help us edit and write stories from our families who have children with an ultra rare disease - stories of their path to diagnosis, the story of losing thier child, and everything in and around these times. Sometimes finding a way to get humor across is difficult, but in these situations humor is sometime the only way to survive the intense medical issues parents encounter when taking care of a child with complex medical needs. We hope to turn these stories into a book to publish. This will be a project that will take a long time for us to gather the stories from the families and then pass them to the writers to work with in telling them in a good storytelling way. The syndrome is very sad, isolating, but there are some amazing blessing and life lessons that we (parents) learn from having a child with disabilites who is happy jovial outgoing sweet gentle fragile and sassy. I could use help creating the writing prompts for parents.
P.O. Box 282, Waterford, VA 20197, US
Helping children with Cockayne syndrome and their families improve their quality of life through support, education and research.
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.
This is a Virtual Opportunity with no fixed address.
September 3, 2024
