FIGHTSMA INC
8814 FARGO ROAD SUITE 225, RICHMOND, VA 23229 www.fightsma.org (no longer active)

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Organizations Filed Purposes: FIGHTSMA ENGAGES LEADING SCIENTISTS AND POLICYMAKERS TO PURSUE A CURE FOR, AND RAISES PUBLIC AWARENESS OF SPINAL MUSCULAR ATROPHY (SMA), A DEGENERATIVE NEUROMUSCULAR DISEASE WHICH IS THE LEADING GENETIC CAUSE OF DEATH FOR CHILDREN UNDER 2. APPROXIMATELY 1 IN 40 PEOPLE CARRY THE GENE FOR THIS DISEASE, AND ABOUT 1 IN 10,000 LIVE BIRTHS ARE AFFECTED. IN ADDITION TO FUNDING VITAL SCIENTIFIC RESEARCH, FIGHTSMA WORKS TO MAINTAIN AN ACTIVE DIALOG BETWEEN THE SCIENTIFIC RESEARCH COMMUNITY, THE PATIENT COMMUNITY, AND POLICYMAKERS.

FIGHTSMA BRINGS TOGETHER THE WORLDS LEADING SMA SCIENTISTS TO COLLABORATE ON THE STATE OF EXISTING RESEARCH ON SMA AND PURSUE FUNDING FOR THAT RESEARCH. FIGHTSMA ALSO EDUCATES PATIENTS AND FAMILIES ABOUT PROMISING RESEARCH AND CLINICAL TRIALS - AND STAYS ENGAGED WITH PUBLISHED RESEARCH UPDATES DURING THE YEAR. FIGHTSMA ACTIVELY ENGAGES GOVERNMENT LEADERS AND POLICY MAKERS TO BUILD SUPPORT FOR PEDIATRIC RESEARCH. FINALLY, FIGHTSMA PROVIDES PATIENTS AND FAMILIES WITH RESOURCES (ONLINE, IN SOCIAL MEDIA, AND IN PRINT) TO UNDERSTAND SMA AND WHAT THEY CAN DO TO LIVE WITH THE DISEASE, AND HELP IN THE FIGHT FOR A CURE.

FIGHTSMA ENGAGES IN A BROAD RANGE OF PROMISING RESEARCH EFFORTS. GRANTS ARE GIVEN TO ESTABLISHED SCIENTISTS/RESEARCH CENTERS WITH A TARGETED FOCUS ON RESEARCH THAT BRING PATIENTS CLOSER TO A TREATMENT FOR THE DISEASE. IN ADDITION, FIGHTSMA PARTNERS WITH THE GWENDOLYN STRONG FOUNDATION TO INSPIRE A NEW GENERATION OF SMA RESEARCHERS THROUGH THE EMERGING INVESTIGATOR AWARDS, AWARDED TO EMERGING SCIENTISTS PROPOSING NOVEL RESEARCH IN THE SMA REALM.

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