SHARE AND CARE COCKAYNE SYNDROME NETWORK INC

Programs: Cs family services program: the purpose of the sccs family services program is to create and foster a caring community that will offer each cs family information, guidance and emotional support and maintain the most comprehensive membership registry of individuals affected by cockayne syndrome. Sccs maintains the following resources for affected families: the cs website www. Cockaynesyndrome. Org and the facebook private medical forum for cockayne syndrome as well as the facebook fan page. Our international cs family conference is held every year in which the latest information is discussed with families. Free medical consults are also held enabling families to consult with medical experts from around the world. In addition the consults offer families the opportunity to participate in research studies, provide important information and blood samples to test. "cs sibs" is a support program for kids who have siblings with cockayne syndrome. They are sent a birthday package every year that recognizes them as a terrific sibling. We also help locate summer camps for siblings to attend that will help them to grow. "good grief" is a support program for bereaved parents, it is a private facebook group for parents to provide peer to peer support and the discussion is facilitated by a bereaved cs parent who has training in counseling.

cs awareness program: awareness is the common thread woven through all the sccs programs. Our goal is to raise awareness and to reach out to the medical and research communities for their support in the advancement of research and clinical care that would benefit individuals affected by cockayne syndrome. Sccs is committed to providing information to help people understand cs. Through the use of events, publications, website, facebook, twitter, instagram, the network disseminated information beyond families, creating a global community with funders, physicians, and researchers. We provide brochures, balloons, wristbands for the butterfly walk cs family fun raisers which help to raise awareness and funds to help support research, support programs, and the annual family conference. Our family conference was covered by the associated press and the story of our cs kids was picked up by over 30 news sources, it was the most popular story of the week for the associated press.

cs research program:sccs continues to follow research for cs and connects families with researchers. Our scientific meetings are held every-other-year and are in conjunction with our annual family conferences. The first scientific meeting was held in 2012. In 2013 we helped the researchers connect with families to obtain information and blood samples for their research projects. The researchers will present their results at the next scientific meeting in 2014.