Myasthenia Gravis Foundation Of America Inc

COMMITTED TO FINDING A CURE FOR MYASTHENIA GRAVIS AND CLOSELY RELATED DISORDERS, IMPROVING TREATMENT OPTIONS, AND PROVIDING INFORMATION AND SUPPORT TO PEOPLE WITH MYASTHENIA GRAVIS THROUGH RESEARCH, EDUCATION, COMMUNITY PROGRAMS AND ADVOCACY.

EVALUATING, FUNDING, AND DISSEMINATING CRITICAL RESEARCH: FUNDING OF HIGH IMPACT MG RESEARCH AT PROMINENT UNIVERSITIES AND MEDICAL INSTITUTIONS, INCLUDING LEVERAGING FUNDS IN COLLABORATION WITH THE AMERICAN BRAIN FOUNDATION TO BRING NEW SCIENTISTS TO MG RESEARCH THROUGH FELLOWSHIPS, AND FUNDING PILOT GRANTS AIMED AT LEADING TO LARGER STUDIES. MGFA MAINTAINS THE ONLY US MG PATIENT REGISTRY, WHICH HAS BEEN GROWN TO INCLUDE NEARLY 3,000 PARTICIPANTS. MGFA SPONSORS AN ANNUAL SCIENTIFIC SESSION IN CONJUNCTION WITH THE MEETING OF THE AANEM, ATTRACTING AS MANY AS 150 ATTENDEES. MGFA PROVIDES INFORMATION TO MEMBERS ABOUT RESEARCH INITIATIVES AND PROGRESS, AND SEND E-BLASTS TO MORE THAN 20,000 PEOPLE WHEN THERE IS BREAKING NEWS.

AWARENESS AND ADVOCACY: MGFA PROVIDES OVER 20 EDUCATIONAL BROCHURES ON TOPICS IMPORTANT TO PEOPLE LIVING WITH MG, FREE OF CHARGE TO PATIENTS AND THE PUBLIC. IN ADDITION, MGFA PROVIDES MANUALS AND INFORMATION FOR HEALTH CARE PROFESSIONALS. THE MGFA CONDUCTS AN ANNUAL AWARENESS CAMPAIGN, CENTERED ON JUNE AS THE MG AWARENESS MONTH, REACHING OUT TO PEOPLE THROUGH OUR SUPPORT GROUPS, AN AWARENESS TOOLKIT FOR ALL WHO ARE INTERESTED IN RAISING AWARENESS OF MG IN THEIR COMMUNITIES, PRESS RELEASES, POSTERS AND PROMOTION IN SOCIAL MEDIA. THE MG WALK ALSO SERVES AS A VEHICLE TO GROW AWARENESS AND LINK PATIENTS AND FAMILIES IN MORE THAN 35 COMMUNITIES NATIONWIDE. MGFA MAINTAINS AN EXTENSIVE WEBSITE WITH EDUCATIONAL CONTENT AND NEWS AS WELL AS FACEBOOK PAGE TO PROMOTE AWARENESS AND THE ORGANIZATION'S EDUCATIONAL MISSION. ANNUALLY, A PATIENT EDUCATION CONFERENCE IS PRODUCED IN VARIOUS LOCALES AROUND THE U.S. WITH A FULL PROGRAM OF SPEAKERS, WORKSHOPS AND EXHIBITORS OVER 2 DAYS. THE FOCUS ON MG NEWSLETTER COVERS PATIENT STORIES, ORGANIZATIONAL ACTIVITIES, COMMUNITY SUPPORT GROUP ACTIVITIES, AND RESEARCH UPDATES AND IS SENT TO 25,000 PLUS PEOPLE TWICE A YEAR.

INFORMATION, EDUCATION, AND SUPPORT: MGFA PROVIDES MATERIAL, INFORMATION AND REFERRAL, AND EDUCATION AND SUPPORT PROGRAMS TO HELP PEOPLE MANAGE THE CHALLENGES OF LIVING WITH MYASTHENIA GRAVIS. MGFA IS A UNIFIED ORGANIZATION THAT SUPPORTS THE DELIVERY OF PROGRAMS AND SERVICE THROUGH CENTRAL MANAGEMENT OF A NETWORK OF APPROXIMATELY 100 COMMUNITY GROUPS NATIONWIDE. MANUALS, TOOLS, ORIENTATION, NETWORKING AND TRAINING SESSIONS FOR GROUP LEADERS ARE FACILITATED BY THE HOME OFFICE. A DATABASE OF MEMBERS IS MAINTAINED, WITH A NEW TOOL IMPLEMENTED TO ALLOW FOR BETTER IDENTIFICATION OF MEMBERS AND THEIR NEEDS. THE FOUNDATION MAINTAINS A WEB RESOURCE JUST FOR COMMUNITY AND SUPPORT GROUP LEADERS. FOUNDATION STAFF RESPOND DAILY TO TELEPHONE AND EMAIL INQUIRIES FOR THOSE SEEKING INFORMATION ABOUT MG AND CONNECTION TO COMMUNITY RESOURCES. EDUCATIONAL WEBINARS ARE PROVIDED SEVERAL TIMES A YEAR. MGFA HAS A HIGHLY ENGAGED MEDICAL AND SCIENTIFIC ADVISORY BOARD AND NURSES ADVISORY BOARD, POPULATED BY TOP MG EXPERTS WHO SUPPORT THE ORGANIZATION THROUGH REVIEW OF ALL MATERIALS AND INFORMATION OF A MEDICAL NATURE, AND WHO SERVE AS SPEAKERS AND SPOKESPERSONS FOR MGFA AS NEEDED.

MGFA REACHES OUT TO THE MG COMMUNITY THROUGH SOCIAL MEDIA VEHICLES SUCH AS FACEBOOK AND TWITTER WHEN THERE IS BREAKING NEWS. THE ORGANIZATION HAS ALSO DEVELOPED TOOLS AND STRATEGIES TO HELP WITH HEALTH INSURANCE DENIALS FOR MG TREATMENTS AND THERAPIES, AND THROUGH AN ADVOCACY COMMITTEE, PARTNERSHIP WITH OTHER ORGANIZATIONS AND A GRASSROOTS NETWORK, SUPPORTS LEGISLATION AND ISSUES IMPORTANT TO THE MG COMMUNITY.