Smith-Lemli-Opitz-Rsh Foundation

ORIGINALLY, THE SMITH-LEMLI-OPITZ/RSH FOUNDATION WAS CREATED IN 1988 TO GIVE A GROUP OF 37 FAMILIES WITH SLO CHILDREN A NETWORK TO EXCHANGE EXPERIENCES AND INFORMATION ABOUT SMITH-LEMLI-OPITZ SYNDROME. SINCE THEN, THE GROUP HAS GROWN TO MORE THAN 500 FAMILIES IN THE UNITED STATES AND ACROSS THE WORLD.THE SLO/RSH FOUNDATION'S WEBSITE (WWW.SMITHLEMLIOPITZ.ORG) IS OFTEN A PARENT'S FIRST POINT OF CONTACT AFTER THEIR CHILD HAS BEEN NEWLY DIAGNOSED WITH THE SMITH-LEMLI-OPITZ SYNDROME. ON THE WEBSITE, FAMILIES WILL FIND A SYNDROME OVERVIEW AND RELATED RESEARCH ARTICLES, INFORMATION ABOUT ONGOING RESEARCH STUDIES, AND AN INVITATION FOR FAMILIES TO JOIN OUR SPECIAL SUPPORT COMMUNITY. THE FOUNDATION, IN CONJUNCTION WITH VOLUNTEERS, HAS SET UP E-MAIL AND SOCIAL MEDIA GROUPS SUCH AS FACEBOOK, TWITTER AND OUR SLO YAHOO GROUP SO THAT FAMILIES CAN CONTACT EACH OTHER INFORMALLY. THIS MEDIUM PROVIDES IMMEDIATE SUPPORT FOR FAMILIES TO ASK QUESTIONS, SHARE IN JOYFUL TIMES AND SHARE IN GRIEF OR FRUSTRATION.ADDITIONALLY, THE FOUNDATION PROVIDES SEMI-ANNUAL NEWSLETTERS AND HELPS TO SPONSOR REGULAR NATIONAL CONFERENCES WHERE PHYSICIANS, SCIENTISTS, AND PARENTS CAN LEARN MORE ABOUT THE SYNDROME AND FROM EACH OTHER.ANOTHER IMPORTANT GOAL OF THE FOUNDATION, WHICH IS RUN SOLELY BY VOLUNTEERS, IS TO RAISE AND PROVIDE FUNDS TO PROMOTE RESEARCH INTO TREATMENTS AND ULTIMATELY A CURE FOR SMITH-LEMLI-OPITZ SYNDROME.