Restless Legs Syndrome Foundation Inc

RLS: RAISE AWARENESS, EDUCATE, IDENTIFY BETTER TREATMENTS & SUPPORT RESEARCH INTO CAUSES & CURES

EDUCATIONAL. PROVIDING TRUSTED, UNBIASED INFORMATION ABOUT RESTLESS LEG SYNDROME ALSO KNOWN AS WILLIS-EKBOM DISEASE TO INDIVIDUALS AND HEALTHCARE PROVIDERS THROUGH PUBLICATIONS, WEBINARS, A WEBSITE, SOCIAL MEDIA SITES, AND DIRECT COMMUNICATIONS. PUBLICATIONS INCLUDE: A GENERAL INFORMATIONAL BROCHURE ON RLS AND RLS AND PLMD IN CHILDREN AND ADOLESCENTS; RLS GUIDE FOR TEENS, RLS GUIDE FOR CHILDREN, TWENTY-FOUR DIFFERENT HANDOUTS ON RLS SPECIFIC TOPICS DIRECTED TOWARDS PATIENTS; A QUARTERLY NEWS MAGAZINE; MONTHLY ONLINE E-NEWSLETTER; TWO SPECIALTY BROCHURES DIRECTED TO HEALTHCARE PROVIDERS; AND A MEDICAL BULLETIN ISSUED AS DEVELOPMENTS MERIT. DURING THIS FISCAL YEAR, ELEVEN WEBINARS ON RLS-RELATED TOPICS WERE OFFERED TO THE PUBLIC. OVER 5,395 PARTICIPANTS VIEWED THESE WEBINARS. THE 12-PART EDUCATIONALPHYSICIAN WEBINAR SERIES WAS OPEN TO PHYSICIANS, NURSE PRACTITIONERS AND PHYSICIAN ASSISTANTS TO ENHANCE CLINICAL KNOWLEDGE REGARDING DIAGNOSIS, TREATMENT AND MANAGEMENT OF RLS PATIENTS. THIS WEBINAR SERIES IS AVAILABLE ON DEMAND. THE ORGANIZATION'S WEBSITE WWW.RLS.ORG ATTRACTS OVER 149,037 ONLINE VISITORS THAT GENERATE OVER 385,367 PAGE VIEWS EACH YEAR. THE RLS FACEBOOK PAGE HAS 13,243 SUPPORTERS AND PARTICIPANTS. THE RLSF BLOG RECEIVED OVER 1,256,324 PAGE VIEWS THIS YEAR, AND THE RLS FOUNDATION YOUTUBE CHANNEL HAS RECEIVED OVER 151,261 VIEWS. THE FOUNDATION EXECUTES A PUBLIC POLICY INITIATIVE PROGRAM WHOSE GOALS ARE TO RAISE AWARENESS AND PROVIDE EDUCATION AROUND THREE SPECIFIC AREAS: WHAT IS RLS AND HOW MANY ARE AFFECTED; THE NEED FOR INCREASED MEDICAL RESEARCH FUNDING; AND THE NEED FOR ACCESS TO APPROPRIATE TREATMENT FOR INDIVIDUALS WITH RLS.

MEMBERSHIP. THE RLS FOUNDATION SERVES AS A SUPPORT STRUCTURE FOR OVER 24,000 INDIVIDUALS WHO, ON AN ANNUAL BASIS, SEEK INFORMATION ON RLS, EITHER AS ONE WHO HAS RLS OR AS ONE WHO HAS A FRIEND OR LOVED ONE WHO SUFFERS FROM THE DISEASE. 5,731 MEMBERS HAVE JOINED THE RLS FOUNDATION AND TAKE ADVANTAGE OF THE CLEARINGHOUSE OF SERVICES THAT PROVIDE INFORMATION ON LATEST DEVELOPMENTS IN TREATMENT, COUNSELING AND CONVERSATION WITH OTHERS WHO SHARE THE AFFLICTION. OVER 150 MEDICAL PROFESSIONALS SPECIALIZING IN THE TREATMENT OF RLS ARE MEMBERS OF THE HEALTHCARE PROVIDER DIRECTORY. MEMBER BENEFITS INCLUDE ACCESS TO A PROPRIETARY COLLECTION OF EDUCATIONAL MATERIALS INCLUDING AN RLS MEDICAL BULLETIN FOR HEALTHCARE PROVIDERS, A QUARTERLY NEWS MAGAZINE, A MONTHLY E-NEWSLETTER, A MEDICAL-ALERT CARD AND ACCESS TO THE MEMBERS-ONLY SECTION OF THE RLS WEBSITE. THE FOUNDATION PROVIDES SCHOLARSHIP MEMBERSHIPS FOR THOSE NEEDING ASSISTANCE, AND NEVER TURNS ANYONE AWAY SEEKING INFORMATION AND SUPPORT. THE MEMBER WEBSITE PROVIDES VISITORS WITH INFORMATION ABOUT RLS, TREATMENT GUIDELINES, RESEARCH ADVANCEMENTS, ADVOCACY OUTREACH, DISCUSSION PANELS AND LINKS TO RLS FOUNDATION SOCIAL MEDIA SITES.

RESEARCH. THE RLSF SUPPORTS AND FUNDS RLS RELATED RESEARCH PROJECTS. DURING THE CURRENT FISCAL YEAR, ONE GRANT WAS AWARDED FOR THE MULTI-CENTER LONGITUDINAL PILOT OBSERVATIONAL STUDY OF THE EFFICACY AND TOLERABILITY OF LONG-TERM TREATMENT OF RLS USING OPIOIDS (OPIOID REGISTRY).

SUPPORT GROUPS: THE RLS FOUNDATION SUPPORTS SIXTY-TWO SUPPORT GROUP LEADERS, VIRTUAL SUPPORT GROUP LEADERS AND CONTACT VOLUNTEERS IN THIRTY-SIX STATES AND CANADA. EACH LEADER HOLDS AT LEAST ONE IN-PERSON MEETING PER YEAR IN THEIR LOCAL COMMUNITY. AT THESE MEETINGS, RLS FOUNDATION EDUCATIONAL MATERIALS ARE DISTRIBUTED TO ATTENDEES. SUPPORT GROUP LEADERS WORK WITH A MEDICAL ADVISOR THAT ASSISTS THE GROUP BY PRESENTING ON RLS TOPICS OF INTEREST, SUGGESTING OTHER MEETING PRESENTERS AND OVERALL SUPPORT TO THE GROUP. VIRTUAL SUPPORT GROUPS (VSG), A NEW ONLINE SUPPORT GROUP CREATED IN RESPONSE TO THE COVID- 19 PANDEMIC AND SOCIAL DISTANCING REQUIREMENTS, IS NOW A PERMANENT PROGRAM THAT CONTINUES AS A MEANS FOR THE RLSF TO PROVIDE FOUR REGULARLY SCHEDULED MONTHLY VIRTUAL GROUPS TO CONNECT AND SUPPORT INDIVIDUALS WITH RLS USING VIDEO CONFERENCING ACCESSIBLE TO ALL IN THE RLS COMMUNITY. RLSF EDUCATIONAL MATERIALS FOR DOWNLOAD ARE MADE AVAILABLE TO VSG ATTENDEES. THE NUMBER OF INDIVIDUALS REACHED THROUGH VIRTUAL SUPPORT GROUPS WAS 813 (412 UNIQUE INDIVIDUALS - MANY ATTEND MULTIPLE VSG MEETINGS THROUGHOUT THE YEAR).