This year’s conference theme is entitled: “New Directions.” For over three decades, The Share & Care Cockayne Syndrome Network has been connecting CS families around the world and holds conferences in different locations across the U.S. from the east coast to the west coast, from north to south. Today it’s normal to have 25 families with a child living with CS as well as 25 families who have lost a child with CS. Of that number, it usually is the first CS Conference for over a quarter of those attending. Meeting other families who understand life with a child with CS is unlike any other conference you may ever attend. Everyone feels they are in a place where they belong. We often say that those at the conference are friends you simply have not yet met.
At each conference, there are many activities, but you decide what is right for you. There is a family introduction on the first night where each family introduces their child and family. Entertainment is provided for children while speaker presentations on research developments are shared by well-known researchers from Harvard, Children’s Hospital, National Institutes for Health, and more. There are discussions for bereaved parents and panel discussions where families can learn and share from doctors and each other. Don’t forget to bring your bathing suits for the indoor pool and also workout clothes for the gym. There’s also a butterfly release, a group outing, and a silent auction is held on Saturday at the final evening banquet where families bring donated items and handmade items and some extremely priceless items made by children with CS.
You’ll find a hospitality room where if you like a more intimate time with others, join in the evening sharing sessions after the evening events. But don’t miss the butterfly release on Saturday morning where as many as 100 butterflies are released!
Register Now for the 13th International Gathering in
Santa Ana July 26-29!
JOIN OUR WALL OF FAME! If you are not able to attend the conference, there are still ways that you can participate by sending in items for the silent auction and by sponsoring a Star with your child’s name and picture. We will be creating a WALL OF FAME like Hollywood’s Walk of Fame by decorating the main conference meeting area staring our kids with CS. You have the opportunity to sponsor a Star for your child, grandchild, or sibling, for your loved one’s memory or in their honor; whether you attend the conference or not.
JOIN OUR WALL OF FAME! Using card stock paper cut out a Star 8 inches in diameter and put the child’s First and Last name in ALL CAPS.. and decorate with glitter or any crafty items you would like to use. We will provide a black background for the “WALL OF FAME” STARS and/or you can put it on black construction paper to add their handprints and autograph. You can bring them to the conference or mail them in by July 20th to:
Share & Care
C/O Andrea Penney
1326 Bonarden Lane
Chandler, AZ 85226
A suggested tax deductible donation of $10.00 would be greatly appreciated but not required to participate.