MUSCULAR DYSTROPHY ASSOCIATION INC
Programs
Health Care and Community Services
HEALTH CARE AND COMMUNITY SERVICES:MDA IS COMMITTED TO TRANSFORMING THE LIVES OF PEOPLE AFFECTED BY MUSCULAR DYSTROPHY, ALS AND RELATED NEUROMUSCULAR DISEASES THROUGH INNOVATIONS IN SCIENCE AND INNOVATIONS IN CARE. AS THE LARGEST SOURCE OF FUNDING FOR NEUROMUSCULAR DISEASE RESEARCH OUTSIDE OF THE FEDERAL GOVERNMENT MDA HAS COMMITTED MORE THAN $1 BILLION TO ACCELERATE THE DISCOVERY OF THERAPIES AND CURES. WE SUPPORT THE LARGEST NETWORK OF MULTIDISCIPLINARY CLINICS AT MORE THAN 150 TOP MEDICAL INSTITUTIONS, SERVE THE COMMUNITY WITH ONE-ON-ONE SPECIALIZED SUPPORT, AND OFFER EDUCATIONAL CONFERENCES, EVENTS, AND MATERIALS FOR FAMILIES AND HEALTHCARE PROVIDERS. EACH OF OUR MDA CARE CENTERS OFFERS INDIVIDUALS AND FAMILIES BEST-IN-CLASS, COMPREHENSIVE CARE FROM AN INTEGRATED MULTIDISCIPLINARY TEAM OF HEALTHCARE SPECIALISTS CONVENIENTLY SITED AT ONE LOCATION. IN A SINGLE DAY, PATIENTS CAN SEE MULTIPLE HEALTHCARE PROVIDERS WHO WORK TOGETHER TO ENSURE COORDINATED INDIVIDUAL CARE FOR EVERY PATIENT TO BEST FIT THEIR SPECIFIC NEEDS. HIGHLY TRAINED MDA CARE SPECIALISTS SERVE AS AN IMPORTANT PART OF THE CARE TEAM, HELPING FAMILIES NAVIGATE THE HEALTH SYSTEM, ANSWERING QUESTIONS, DISTRIBUTING MDA EDUCATIONAL MATERIALS, COORDINATING MDA SERVICES, AND ASSISTING WITH COMMUNITY RESOURCE REFERRALS. EACH YEAR THOUSANDS OF CHILDREN/YOUNG ADULTS LEARN VITAL LIFE SKILLS AND GAIN INDEPENDENCE AT SUMMER CAMP AND THROUGH RECREATIONAL PROGRAMS, AT NO COST TO FAMILIES. EACH CAMP IS STAFFED WITH DEDICATED HEALTH PROFESSIONALS AND TRAINED CAMP VOLUNTEERS WHO MEET THE MEDICAL AND PHYSICAL NEEDS OF EACH CAMPER ALL AT NO COST TO FAMILIES.GeographiesNot indicatedDatesJan 1, 2021 – Dec 31, 2021Source990No causes providedNo populations provided–$14.1MNeuromuscular Disease Research Funding
RESEARCH: MDA IS THE LARGEST NON-GOVERNMENTAL FUNDER OF NEUROMUSCULAR DISEASE RESEARCH IN THE COUNTRY, SUPPORTING MORE THAN 40 NEUROMUSCULAR DISEASES INCLUDING MUSCULAR DYSTROPHY, ALS, AND MANY OTHERS. SINCE ITS INCEPTION IN 1950, MDA HAS INVESTED MORE THAN $1 BILLION IN NEUROMUSCULAR DISEASE RESEARCH TO UNCOVER NEW TREATMENTS AND CURE. A SINGLE BREAKTHROUGH CAN LEAD TO A CURE. OUR UMBRELLA MODEL OF FUNDING RESEARCH ACROSS MANY NEUROMUSCULAR DISEASES MEANS FINDINGS FROM ONE DISEASE OFTEN ENABLE PROGRESS IN OTHERS, MAXIMIZING THE SPEED AT WHICH WE CAN MAKE PROGRESS. SUPPORT FOR MDA'S RESEARCH ENABLES MDA TO FUND LEADING RESEARCH TEAMS WORKING TOWARD BREAKTHROUGH THERAPIES, WHICH CAN HAVE A LIFE-CHANGING IMPACT ON PATIENTS. MDA-FUNDED BREAKTHROUGHS INCLUDE DRUGS FOR AMYOTROPHIC LATERAL SCLEROSIS (ALS), DUCHENNE MUSCULAR DYSTROPHY (DMD), PERIODIC PARALYSIS, POMPE DISEASE, AND SPINAL MUSCULAR ATROPHY (SMA). MDA LAUNCHED THE MOVR (NEUROMUSCULAR OBSERVATIONAL RESEARCH) DATA HUB AS A TRANSFORMATIVE PLATFORM, COMBINING MDA'S CARE CENTER NETWORK WITH A STATE-OF-THE-ART INFORMATION-MANAGEMENT SYSTEM. AS THE LARGEST CENTRALIZED DATA HUB FOR MULTIPLE NEUROMUSCULAR DISEASES, MOVR AGGREGATES CLINICAL, GENETIC, AND PATIENT-REPORTED DATA ACROSS BROAD COMMUNITIES OF HEALTHCARE PROVIDERS, RESEARCHERS, AND INDUSTRY PARTNERS THAT WILL LEAD TO RAPID DEVELOPMENTS IN PATIENT CARE, TREATMENTS, AND CURES.GeographiesNot indicatedDatesJan 1, 2021 – Dec 31, 2021Source990No causes providedNo populations provided–$7.7MProfessional and Public Health Education
PROFESSIONAL AND PUBLIC HEALTH EDUCATION:MDA OFFERS A BROAD AND EXPANDING ARRAY OF RESOURCES AND EVENTS EXPERTLY DEVELOPED TO RESPOND TO THE RAPIDLY CHANGING TREATMENT LANDSCAPE. OUR RESOURCES FOR PROVIDING RELEVANT MEDICAL EDUCATION TO PROFESSIONALS ARE UNPARALLELED AND OUR SERVICES AND INITIATIVES REFLECT OUR LEADERSHIP IN THIS AREA. WE PROVIDE BOTH ACCREDITED CONTINUING MEDICAL EDUCATION (CME) AND NON-CME PROGRAMS. AS THE MOST COMPREHENSIVE NEUROMUSCULAR DISEASE MEETING IN THE U.S., OUR ANNUAL MDA CLINICAL & SCIENTIFIC CONFERENCE PROVIDES A UNIQUE OPPORTUNITY TO LEARN FROM, BE INSPIRED BY, AND SHARE IDEAS WITH EXPERTS FROM ACADEMIA, GOVERNMENT, AND INDUSTRY. AT THE COMMUNITY LEVEL, WE ESTABLISHED MDA ENGAGE, A FLAGSHIP EDUCATIONAL EVENT SERIES THAT BRINGS LOCAL HIGH-IMPACT EDUCATIONAL PROGRAMS TO THE NMD COMMUNITY. EACH OF THE ENGAGE PROGRAMS INCORPORATES MULTIPLE MODULES OF INTEREST, FROM THERAPY DEVELOPMENT ROUNDTABLES TO DISEASE MANAGEMENT TO GENETIC TESTING, DESIGNED SPECIFICALLY FOR COMMUNITY AUDIENCES. EACH EVENT ALSO INCLUDES A SOCIAL ELEMENT FOR FAMILIES AND PARTICIPANTS WITH THE AIM OF STRENGTHENING THE COMMUNITY AND HELPING ATTENDEES MAKE PERSONAL.GeographiesNot indicatedDatesJan 1, 2021 – Dec 31, 2021Source990No causes providedNo populations provided–$5.8M
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