Organizations Filed Purposes:
THE IFOPA'S MISSION IS TO FUND RESEARCH TO FIND A CURE FOR FIBRODYSPLASIA OSSIFICANS PROGRESSIVA (FOP) WHILE SUPPORTING INDIVIDUALS AND THEIR FAMILIES THROUGH EDUCATION, PUBLIC AWARENESS, AND ADVOCACY.
EDUCATION AND SUPPORT PROGRAMS: SUPPORT, BOTH EMOTIONAL AND FUNCTIONAL, IS IMPERATIVE TO THE HEALTH OF THOSE LIVING WITH FOP AS WELL AS THEIR FAMILIES. OVERCOMING CERTAIN OBSTACLES CAN OFTEN BE AS FRUSTRATING FOR FAMILY MEMBERS AS IT IS FOR THE PERSON AFFECTED. THE IFOPA DEVELOPS AND DRIVES VARIOUS PROGRAMS FOR OUR MEMBERSHIP INCLUDING BUT NOT LIMITED TO EDUCATIONAL WEBINARS, A WEBSITE TO EDUCATE FAMILIES AND MEDICAL PROFESSIONALS, A GUIDEBOOK FOR FAMILIES ON HOW TO COPE WITH FOP, A MENTORING SYSTEM FOR THOSE FACING THE DIFFICULTIES OF FOP, GRANTS FOR INDEPENDENT LIVING ASSISTANCE, AN ONLINE INTERACTIVE COMMUNICATION SYSTEM FOR MEMBERS, AND REGIONAL FAMILY AND MEMBER SYMPOSIUMS AND SUPPORT MEETINGS.
PUBLIC AWARENESS: FOP IS ONE OF THE RAREST BONE DISORDERS KNOWN IN THE WORLD. VERY FEW PEOPLE HAVE HEARD OF FOP, LET ALONE KNOW ALL THAT IT ENTAILS - INCLUDING MEDICAL PROFESSIONALS. INCREASING AWARENESS AMONG MEDICAL PROFESSIONALS, POLITICAL OFFICIALS, AND THE PUBLIC AT LARGE IS CRITICAL TO SERVING OUR POPULATION. INCREASED AWARENESS WILL RESULT IN ADDITIONAL FUNDING FOR RESEARCH AND MEMBER PROGRAMS, AND SHOULD DRASTICALLY REDUCE THE NUMBER OF DEVASTATING MISDIAGNOSES. THE IFOPA RAISES AWARENESS THROUGH ADVOCACY, THROUGH THE DISSEMINATION OF EDUCATIONAL AND TREATMENT INFORMATION ON ITS WEBSITE, IN BROCHURES, AND ON DVDS, AND BY MAXIMIZING EVERY MEDIA OPPORTUNITY AVAILABLE TO INFORM THE PUBLIC AND THE MEDICAL COMMUNITY ABOUT FOP.
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 |
|---|
| L Adam Sherman | RESEARCH DEVELOPMENT & PARTNERSHIPS | 40 | $189,450 |
| Michelle Davis | EXECUTIVE DIRECTOR | 40 | $151,340 |
| Chrissy Flexer | DIRECTOR | 1 | $0 |
| Nancy Sando | DIRECTOR | 1 | $0 |
| Rory Otto | DIRECTOR | 1 | $0 |
| Megan Olsen | DIRECTOR | 1 | $0 |
| Karen Munro | SECRETARY | 1 | $0 |
| Gary Mcguire | DIRECTOR | 1 | $0 |
| Joseph Martucci | DIRECTOR | 1 | $0 |
| Amy Gordon | CHAIRMAN | 5 | $0 |
| Kristi Gonzales | VICE CHAIR | 1 | $0 |
| Danielle Fraser | DIRECTOR | 1 | $0 |
| Paul Brinkman | DIRECTOR | 1 | $0 |
| Chris Bedford-Gay | DIRECTOR | 1 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202003219349318035_public.xml