Share and Care
Share and Care Cockayne Syndrome Network, Inc.
Meanwhile Share and Care has its own multilingual (English, German, Spanish, Portuguese and a reduced Japanese version) webpage http://www.cockayne-syndrome.org/ .
The
Webpage contains important general informationen about the Cockayne
Syndrom, Self-Support Group, Point of
Contacts, Links. A forum for allows exchange for
families. To find it go back to the Internationale
Homepage and click on Chat/Discussion
on
the right hand side.
Share and Care was started by Pat Cahill in 1981 when her son, Scott, was diagnosed with CS. Pat mailed newsletters to a small group of families that steadily grew over the years. In 1993, Share and Care expanded when Teresa Wall got involved after her daughter, Candice, was diagnosed. This expansion was made possible only by the encouragement and support of Dr. Thaddeus Kelly at the University of Virginia in Charlottesville.
The Mid-Atlantic Regional Human Genetic Network (MARHGN) provided "seed money" from 1993 to 1996. The Share and Care CS Network, Inc. is now a self-sufficient, non-profit organization that continues to grow.
Cathy Garrott, a missionary in Japan, helped to get the pamphlet translated and then started a support group there in 1995. Cathy and her husband, Jack, have done a tremendous job in providing support in Japan. They call their support group "The Connecting Bridge."
