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 WORLD'S 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.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Kathy Tompkins | DIRECTOR | 0 | $0 |
| Bill Strong | DIRECTOR | 0 | $0 |
| Martha Slay | DIRECTOR | 0 | $0 |
| Tracy Lacey | DIRECTOR | 0 | $0 |
| Shawn Lacey | DIRECTOR | 0 | $0 |
| Michael Calise | DIRECTOR | 0 | $0 |
| Rod Adams | DIRECTOR | 0 | $0 |
| Elise Finkner | SECRETARY | 0 | $0 |
| Deanna Griffin | TREASURER | 0 | $0 |
| Terry Griffin | VICE CHAIR | 0 | $0 |
| Joseph Slay | CHAIR | 0 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/201741949349301509_public.xml