Myositis Association

IN 2021, WE EXPANDED THE FOOTPRINT OF TMA'S VIRTUAL OUTREACH TO INCLUDE NEW EDUCATIONAL PROGRAMMING, THE CREATION OF AFFINITY GROUPS, AND THE LAUNCH OF A NEW NATIONAL SIGNATURE AWARENESS AND FUNDRAISING CAMPAIGN, FUN FIT FLEX IN 4 LOCAL COMMUNITIES AND VIRTUALLY. EACH EVENT HOSTS A NON-COMPETITIVE FUN WALK, A FESTIVAL OF FITNESS DEMONSTRATIONS AND ACTIVITIES, NUTRITION AND WELLNESS COMPONENTS, AND FAMILY FUN! FUNDS RAISED THROUGH FUN FIT FLEX HELP SUPPORT PATIENT PROGRAMS, ENHANCE PROFESSIONAL EDUCATION EFFORTS, AND PROPEL CRITICAL RESEARCH FOR CURES.

TMA'S SUPPORT GROUPS OFFER MEMBERS THE CHANCE TO SHARE THEIR FEELINGS AND DISCUSS THEIR CONCERNS WITH PEOPLE IN SIMILAR SITUATIONS. THESE GROUPS (OFFERED IN PERSON AND VIRTUALLY) ENCOURAGE AN ATMOSPHERE OF COMMUNICATION AND COMPASSION. TMA SUPPORTS AFFINITY GROUP MEETING CIRCLES WITH OUTREACH EFFORTS TARGETED TOWARD SUPPORTING AND EXTENDING OUR ORGANIZATION'S REACH INTO NEW COMMUNITIES. THE TERM AFFINITY GROUP IS USED AS A BRINGING TOGETHER OF PEOPLE WHO HAVE COMMONALITY. AFFINITY GROUPS ARE FOR INDIVIDUALS WHO IDENTIFY AS MEMBERS OF THE GROUP AND CAN SPEAK TO THE EXPERIENCE OF BEING A PART OF THE GROUP FROM AN "I" PERSPECTIVE. THESE GROUPS ALSO HELP TO ADDRESS GROWING HEALTH EQUITY AND ACCESS ISSUES IN THE RARE DISEASE INDUSTRY. INCREASED AWARENESS OF MYOSITIS HAS THE POTENTIAL TO LEAD TO EARLIER DIAGNOSIS AND MORE EFFECTIVE TREATMENTS, IMPROVING THE QUALITY OF LIFE FOR OUR PATIENTS. TMA ALSO ADVOCATES FOR PATIENTS THROUGH EDUCATIONAL AND MEDIA EVENTS, AS WELL AS ADVANCING LEGISLATION THAT REMOVE BARRIERS TO ACCESSING THE BEST OF MYOSITIS CARE. THROUGH PUBLIC RECOGNITION OF MYOSITIS, INCREASED RESEARCH FUNDING, GREATER ACCESS TO CARE, AND BETTER COVERAGE AND REIMBURSEMENT FOR TREATMENTS; TMA GIVES OUR COMMUNITY TOOLS AND GUIDANCE TO MAKE A DIFFERENCE AND WORKS TO ORIENT LEGISLATORS TO THE DISEASE AND HOW LIVING WITH MYOSITIS IMPACTS OUR PATIENT COMMUNITY. THROUGH THE ORGANIZATION'S PUBLICATIONS, NEWSLETTERS, WEBSITE AND SUPPORT GROUPS, TMA EDUCATES AND SUPPORTS PATIENTS, CARE PARTNERS AND CLINICIANS ABOUT MYOSITIS DISEASES. TMA HAS APPROXIMATELY 54 PEER-LED SUPPORT GROUPS ACROSS THE NATION THAT MEET PERIODICALLY THROUGHOUT THE YEAR BOTH VIRTUALLY AND IN PERSON. EDUCATION AND UPDATES ARE OFFERED THROUGH OUR PRINT AND ELECTRONICALLY PRODUCED NEWSLETTER SENT TO APPROXIMATELY 23,000 MEMBERS, OUR VIDEOS ON YOUTUBE, OUR MYOSITIS 101 PHYSICIAN AND PATIENT BOOKLETS, THROUGH TMA'S SOCIAL MEDIA CHANNELS AND WEBSITE, AND THROUGH OUR ONLINE COMMUNITY FORUM.

WE AIM TO IDENTIFY THE UNDERLYING CAUSES AND NATURAL PROGRESSION OF MYOSITIS, DEVELOP BETTER TREATMENTS AND MORE EFFECTIVE THERAPIES, AND ULTIMATELY TO CREATE A CURE FOR THIS COLLECTION OF DISABLING DISEASES. SCIENTISTS, PRACTICING PHYSICIANS AND OTHER MEDICAL PROFESSIONALS HAVE SUPPORTED TMA THROUGH OUR ACTIVE MEDICAL ADVISORY BOARD. THIS GROUP PROVIDES MEDICAL INFORMATION TO STAFF AND PATIENTS AND GUIDES THE TMA RESEARCH PROGRAM. THE MYOSITIS ASSOCIATION RECOGNIZES THAT THE MYOSITIS PATIENT'S BEST HOPE FOR A CURE LIES IN RESEARCH. TMA OFFERS A RESEARCH FELLOWSHIP PROGRAM TO ATTRACT AND ENCOURAGE POST-DOCTORAL TRAINEES (PHD AND MD) AND YOUNG PHYSICIANS TO PURSUE CAREERS IN THE FIELD OF MYOSITIS RESEARCH. TMA ALSO FUNDS RESEARCH GRANTS TO INITIATE INNOVATIVE PILOT PROJECTS THAT WILL SUPPORT LARGER FUNDING OPPORTUNITIES. SINCE 2002, THE MYOSITIS ASSOCIATION HAS FUNDED RESEARCH (ALMOST $9 MILLION) DESIGNED TO UNDERSTAND THE UNDERLYING CAUSES AND NATURAL PROGRESSION OF MYOSITIS, DEVELOP BETTER TREATMENTS AND MORE EFFECTIVE THERAPIES, AND ULTIMATELY TO CREATE A CURE.

THE MYOSITIS ASSOCIATION'S INTERNATIONAL ANNUAL PATIENT CONFERENCE AND BRINGS TOGETHER MYOSITIS PATIENTS WITH HEALTH PROFESSIONALS WHO SPECIALIZE IN MYOSITIS AND RELATED FIELDS. THIS EVENT FEATURES A PANEL OF MEDICAL EXPERTS AND SESSIONS ON TREATMENTS, PROMISING RESEARCH, COPING STRATEGIES, EXERCISE TECHNIQUES, AND MORE. THE MYOSITIS AWARENESS MONTH VIRTUAL SUMMIT (MAY) CREATES BROADER COMMUNITY AWARENESS, DIRECT OUR MEMBERS TO TMA OFFERINGS AND RESOURCES, EDUCATE AROUND PATIENT AND DISEASE ADVOCACY, SHARE CLINICAL INSIGHTS, AND BUILD A STRONGER AND MORE CONNECTED MYOSITIS COMMUNITY. TMA PUBLICATIONS (BOTH IN PRINT AND ELECTRONIC) PRESENT INFORMATION ON DIAGNOSIS, TREATMENTS, RESEARCH NEWS, AND OTHER RELEVANT TOPICS THAT HELP PATIENTS AND CAREGIVERS LEARN WHAT THEY NEED TO ADDRESS THEIR INDIVIDUAL HEALTH CARE CONCERNS. TMA ADDITIONALLY HOSTS MONTHLY ASK THE DOC WEBINARS AND EMPOWERMENT CLINICS ONLINE TO PROVIDE EDUCATION AND RESOURCES TO THE PATIENT COMMUNITY YEAR ROUND. THE MYOSITIS ASSOCIATION ALSO PROVIDES EDUCATION PROGRAMS AND RESOURCES FOR HEALTHCARE PROFESSIONALS TO ENSURE THAT THEY RECEIVE THE LATEST INFORMATION ON TREATING MYOSITIS AND COMMUNICATING EFFECTIVELY WITH THEIR PATIENTS.