Smith-Lemli-Opitz Foundation

PROVIDE SUPPORT SERVICES TO FAMILIES AFFECTED BY SLO SYNDROME. ORIGINALLY , THE SMITH-LEMLI-OPITZ FOUNDATION WAS CREATED IN 1988 TO GIVE A GROUP OF 37 FAMILIES WITH SLO CHILDREN A NETWORK TO EXCHANGE EXPRIENCES AND INFORMATION ABOUT SMITH-LEMLI-OPITZ SYNDROME. SINCE THEN, THE GROUP HAS GROWN TO MORE THAN 1,000 FAMILIES IN THE UNITED STATES AND ACROSS THE WORLD. THE SLO 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 FAMILES WILL FIND A SYNDROME OVERVIEW AND RELATED RESEARCH ARTICLES, INFORMATION ABOUT ONGOING RESEARCH STUDIES, AND AN INVITATION FOR FAMILES TO JOIN OUR SPECIAL SUPPORT COMMUNITY. THE FOUNDATION, IN CONJUNCTION WITH VOLUNTEERS, HAS SET-UP E-MAIL AND SOCIAL MEDIA GROUPS SUCH AS TWITTER AND OUR SLOF FACEBOOK 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 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 IS TO RAISE FUNDS AND PROVIDE FUNDS TO PROMOTE RESEARCH INTO TREATMENTS AND ULTIMATELY A CURE FOR THE SMITH-LEMLI-OPITZ SYNDROME.