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Share and Care Cockayne Syndrome Network

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Share and Care Cockayne Syndrome Network’s mission is to help children with Cockayne syndrome and their families improve quality of life through support, education, and research. Share and Care Cockayne Syndrome Network focuses on their goal to help families obtain an earlier diagnosis and share information on drugs and procedures that prove to be beneficial to children with Cockayne syndrome. For more information about Share and Care Cockayne Syndrome Network, please visit their website

People Involved

Jackie Clark, President and Executive Director
Jackie Clark has been a volunteer for Share and Care Cockayne Syndrome Network since 2005. She began as interim Director in 2006 and has been serving as the Executive Director since 2007. Jackie has organized and overseen nine international family conferences bringing medical experts on Cockayne syndrome together to meet kids with Cockayne’s and helping families connect and learn from their experiences. Clark has given speeches on “Introduction to the Cockayne Syndrome Network”, at Children’s Hospital Boston: Cockayne Syndrome: Molecular Mechanisms and Translational Implications and at National Institute of Health: Xeroderma Pigmentosum and other Diseases of Human Premature Aging and DNA Repair: Molecules to Patients. Prior to her work as Executive Director, Clark worked for AOL’s Integrity Assurance area for member’s privacy, security, and protecting children online. Clark gained experience in non-profits as she assisted the Director of Program Development for the Center for Excellence in Education, a multi-program organization benefitting gifted and talented students from around the world as well as providing mentors for inner-city schools. Clark also has volunteered for a variety of organizations including Leukemia and Lymphoma Society, Best Buddies, Loudoun Therapeutic Riding Center, and developed an adopt a soldier program to support the local National Guard on their 15 month deployment to Iraq.

Haylee Carroll, Vice President and Director of Special Projects
Haylee joined Share and Care Cockayne Syndrome Network in 2006 and has volunteered since 2007. Haylee developed a website for Share and Care and utilizes social media trends to promote an active communication network between families from all over the world. Three of Haylee’s five children were born with Cockayne syndrome, she maintains a positive outlook on life and is committed to helping families, creating awareness, and supporting research for Cockayne syndrome. Haylee created and manages a private medical discussion group for parents of kids with Cockayne syndrome to share important medical information. She has held annual fundraisers to benefit Share and Care’s efforts to support families and research. Haylee worked with Author Robbie Woliver of Alphabet Kids’ for the section on Cockayne syndrome providing the story her daughter Ian. Speeches include “Introduction to the Cockayne Syndrome Network”, at Children’s Hospital Boston: Cockayne Syndrome: Molecular Mechanisms and Translational Implications and an appreciation speech at Make A Wish’s volunteer event for what they did for her family, and Haylee also presented her story “A Woman’s Journey” at Oliver Springs community event. Haylee volunteers by serving on the board for “Jayla’s Wings”, an organization awarding financial assistance to children with disabilities. She is rarely seen without her camera on her shoulder. Haylee has an eye and talent for photographing children and she take it with her where ever she goes; see her amazing pictures on her website HeavenlyButterfly.com.

Val Marietti, Program Director
Val developed a sibling support program that sends birthday packages by mail to recognize the often neglected siblings of kids with Cockayne syndrome to let them know they are not only special and loved, but they are also a hero. Since 2008 Val has been gathering age appropriate gift packages and sending them to siblings all over the world on their birthdays. Val also holds fundraisers to support Share and Care CS Network for supporting families and research. Val has three sons, her oldest has Cockayne syndrome and her third son was adopted five years ago and he recently had heart surgery. Val is organizing Share and Care’s next scientific meeting and family conference for Cockayne syndrome in Salt Lake City, UT July 2014.

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4301 Connecticut Ave NW, Suite 404, Washington DC 20008-2369 | Tel: 202.966.5557 | Fax: 202.966.8553 | EIN 52-1571905

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