The Share & Care Cockayne Syndrome Network mourns the loss of Don Hammel who passed away suddenly after suffering a massive stroke. His wife Jenny has requested for Memorial Contributions to go to the Share & Care CS Network for research and care for children with Cockayne syndrome. Their son Joe was diagnosed with CS type-1 two years ago. You can never be prepared for a diagnosis of Cockayne syndrome, and likewise you can never be prepared for the sudden loss of a loving spouse and father. Don will be remembered as we will keep his family in our hearts.
Cockayne syndrome is an extremely rare auto-recessive genetic syndrome characterized by multiple symptoms including dwarfism, photosensitivity, premature aging, and hearing loss. CS is classified by the severity and age of onset. Type-1 is early childhood onset in the second year of life; type II is early onset at birth with severe symptoms; type III is later childhood onset with mild symptoms. For more information about CS, please click on the tab called "About CS" on the left side of this page.
There are over 7,000 rare diseases ... 50% of them affect children ... a third of those children won't live past the age of 5. Out of the 7,000 diseases only 400 of them have treatments. You can help make it 401, please donate on our home page Using our online form is fast, easy and secure. Your gift will make a difference in the lives of people living with Cockayne syndrome and support research to find treatments, care and prevention.
Donations are tax-deductible.
Donate by mail:
Send a check to:
Cockayne Syndrome Network
PO Box 282
Waterford, VA 20197
To make a secure online donation through our partner Network for Good: Please click on the "Donate Now" button on the left hand column of this page.
Share & Care is an ALL VOLUNTEER organization there are no paid salaries, donations go directly to helping families with kids with CS and to research for CS. We are a 501(c)3 Not-for-Profit Organization. Your donations are fully tax deductible and greatly appreciated! :)
We do need more volunteers to help us with our organization. If you have professional skills you could offer to do some consulting for us. If you would like to have a fundraiser we can help you organize one. We are currently in the process of building a new website but we need help creating new content and organizing it, please let us know if you can help. We are also having our next Scientific Meeting for translational research, as well as our Family Conference which will be held together next July in Salt Lake City Utah. If you have connections in any way there, we'd love to hear from you.
On behalf of Share & Care Families, "Thank you for your support!"
For more information on CS click on the "About CS" tab on the left of this page to read and download our brochure.
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