Cockayne Syndrome

Share & Care Conference CoordinatorShare & Care Cockayne Syndrome

Thank you to our sponsors!!!
Thursday August 1, 2013 at 5:00 PM EDT-to-Sunday August 4, 2013 at 9:00 AM EDTAdd to Calendar
Embassy Suites Old Town Alexandria1900 Diagonal RoadAlexandria, VA 22314Driving Directions
We want your kids to be the focus of our Conference. We are going to feature their sweet faces all wrapped up in lollipop brightness. Here are some examples of the design. Even if you can’t make it to the conference, you can send us a picture so we can lollipop your little one!
2013 International Family Conference for Cockayne Syndrome
This year, we’re celebrating “The Sweetness of Life in Every Moment”! The 2017 International Family Conference for Cockaynesyndromeis scheduled to take place August 1 – 4 in the Washinton DC area!Mark your calendars — now’s a great time to figure out your summer vacation schedule.The conference is a great opportunity to meet other families with kids diagnosed with Cockayne Syndrome.This year’s theme is Candylandand the conference title is all about our shared sweet life with CS kids:
Our goal is for our attendees to have a meaningful experience over the long weekend and leave with the latest information about CS along with new and renewed friendships. You will have the chance to share your experiences with new parents and learn from those who have “been there, done that.”
Come learn what Share & Care hasaccomplished over the past year, and what we have planned for 2013 – and beyond. Our fundraising goals and campaigns to raise awareness are big topics we want our attendees to leave excited about. Most importantly you will hear from the top researchers for CS as well asdiscuss our relationship with the Maryland Tissue Bank. You will also finddiscussion groups forfeeding solutions, medication, grief counseling, toys, and much more.
More details on theconferenceand registration informationwill becoming out over the next fewweeks via Constant Contact.
We look forward to seeing you in August!
Jackie Arias Clark
Share & Care Cockayne Syndrome Network
Register Now for the 14th International Gatheringin Washington, DC August 1 – 4!
Show off your sweet kids! 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 Lollipop with your childs name and picture. We will be creating aCandyland wall with Sweet Pics of our kids in the main conference meeting area. We want to feature our kids wrapped up in sweetness where everyone can enjoy them! You have the opportunity to create a Sweet Pic for your child, grandchild, or sibling, for your loved ones memory or in their honor; whether you attend the conference or not.
Lollipop Instructions: You have the choice of sending in a picture no larger than 5 x 7, and our volunteers will assemble your child’s lollipop. Or, if you’re the crafty type, you can make the whole lollipop “head” (we’ll have sticks to finish them off and tags that will have your kid’s name on it). Just cut out two circles – one 8″ in diameter and one 10″ in diameter. Use colored stock or decorate plain paper with pens, glitter, stickers, whatever makes you happy. Glue your child’s picture in the center and label it on the back with your child’s full name. Mail it to the address below, or if you’re coming to the conference, bring it along!
A suggested $10.00 donation would be greatly appreciated (but not required).
Checks, lollipops, or picturesshould be mailed to:
Share & Care CS Network
C/O Karen Prante
5095 Brentwood Farm Drive,
Fairfax, VA 22033