Organizations Filed Purposes:
RESEARCH GRANTS PROGRAM: IN PARTNERSHIP WITH THE UPENN ORPHAN DISEASE CENTER, WE FUNDED 2 CUTTING-EDGE RESEARCH PROJECTS, INCLUDING STUDIES OF POTENTIAL THERAPIES TO CONTROL PROGRESSION OF FIBROUS DYSPLASIA.
OTHER RESEARCH INITIATIVES: WE DEVELOP INNOVATIVE RESEARCH INITIATIVES TO HELP MAKE PROGRESS, INCLUDING THE FD/MAS PATIENT REGISTRY, AN IRB-APPROVED STUDY AND RECRUITMENT RESOURCE FOR RESEARCHERS, AND THE DEVELOPMENT OF AN INTERNATIONAL COALITION OF FD/MAS PATIENT GROUPS AND RESEARCHERS.
COMMUNITY EDUCATION: WE'RE DEDICATED TO EMPOWERING THE FD/MAS COMMUNITY WITH THE BEST EDUCATIONAL RESOURCES. DURING THIS PERIOD, WE PRODUCED TWO FREE COMMUNITY NEWSLETTERS AND EDUCATIONAL WEBINARS FOR PATIENTS AND CAREGIVERS.
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 |
|---|
| Kiran Yarlagadda | DIRECTOR | 0.5 | $0 |
| Gary Pollastro | DIRECTOR | 0.5 | $0 |
| Carrie Newrocki | DIRECTOR | 0.5 | $0 |
| Jocelyn Pederson | DIRECTOR | 0.5 | $0 |
| Leah Suprise | DIRECTOR | 0.5 | $0 |
| Anne Corvelle | DIRECTOR | 0.5 | $0 |
| Lynn Lindaman | DIRECTOR | 0.5 | $0 |
| Sarah Healy | DIRECTOR | 2 | $0 |
| Joyce Ellis | DIRECTOR | 0.5 | $0 |
| Jessica Barrett | DIRECTOR | 0.5 | $0 |
| Lauren Cox Foster | DIRECTOR | 0.5 | $0 |
| Malissa Kenney | SECRETARY | 2 | $0 |
| Jim Rae | TREASURER | 2 | $0 |
| Cindi Brandt Levin | VICE PRESIDE | 2 | $0 |
| Lauren Ruotolo | PRESIDENT | 2 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202141359349301759_public.xml