Organizations Filed Purposes:
THE PARENT PROJECT MUSCULAR DYSTROPHY (PPMD) FIGHTS TO END DUCHENNE. WE ACCELERATE RESEARCH, RAISE OUR VOICES TO IMPACT POLICY, DEMAND OPTIMAL CARE FOR EVERY SINGLE FAMILY, AND STRIVE TO ENSURE ACCESS TO APPROVED THERAPIES.
END DUCHENNE MUSCULAR DYSTROPHY THROUGH RESEARCH, ADVOCACY, EDUCATION, & OPTIMAL MEDICAL CARE.
RESEARCHPPMD'S RESEARCH INITIATIVE IDENTIFIES AND AGGRESSIVELY FUNDS THE MOST PROMISING NEAR AND LONG-TERM DUCHENNE RESEARCH AND CUTTING-EDGE THERAPIES; STIMULATES NEW RESEARCH TO ENSURE THAT THE THERAPEUTIC PIPELINE IS RICH WITH OPPORTUNITY; FACILITATES PRE-COMPETITIVE INDUSTRY INTERACTIONS THROUGH THE DUCHENNE DRUG DEVELOPMENT ROUNDTABLE TO ENHANCE AND HARMONIZE THE CLINICAL TRIAL LANDSCAPE; AND SUPPORTS MULTI-STAKEHOLDER DATA MODELLING CONSORTIA TO ACCELERATE DRUG DEVELOPMENT TIMELINES.THE DUCHENNE REGISTRYTHE DUCHENNE REGISTRY IS A PATIENT-REPORTED REGISTRY FOR INDIVIDUALS WITH DUCHENNE AND BECKER MUSCULAR DYSTROPHY AND CARRIER FEMALES. ESTABLISHED BY PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH IN 2007, THE REGISTRY WAS CREATED TO BRIDGE THE INFORMATION GAP BETWEEN CLINICIANS, RESEARCHERS AND THE PATIENT COMMUNITY, THEREBY ADDRESSING MEDICAL CARE NEEDS AND ACCELERATING THE PACE OF THERAPEUTIC ADVANCEMENTS. OVER 5,000 FAMILIES ACROSS THE GLOBE HAVE EMBRACED THEIR ROLE AS CITIZEN SCIENTISTS AND HAVE CONTRIBUTED TO THE LARGEST PATIENT-REPORTED DATA SET FOR DUCHENNE.CAREPPMD'S CARE INITIATIVE IDENTIFIES GAPS IN CARE FOR PEOPLE WITH DUCHENNE THROUGHOUT THE LIFESPAN AND COLLABORATES WITH HEALTH CARE PROFESSIONALS ACROSS THE GLOBE TO IMPROVE HEALTH OUTCOMES FOR ALL DUCHENNE PATIENTS THROUGH ACCESS TO STANDARDIZED CARE VIA THE CERTIFIED DUCHENNE CARE CENTER PROGRAM.
EDUCATIONPPMD'S EDUCATION INITIATIVE INCREASES AWARENESS AND UNDERSTANDING OF THE DISEASE PROGRESSION AND THE COMPONENTS OF MULTIDISCIPLINARY COMPREHENSIVE CARE NECESSARY TO OPTIMIZE QUALITY AND QUANTITY OF LIFE THROUGHOUT THE LIFESPAN. PPMD PARTNERS WITH EXPERTS IN DUCHENNE TO DEVELOP UP-TO-DATE INFORMATIONAL RESOURCES REGARDING TREATMENT AND CARE THAT WE THEN SHARE BROADLY. PPMD COLLABORATES WITH INTERNATIONAL ORGANIZATIONS TO DEVELOP AND DISSEMINATE EDUCATIONAL RESOURCES APPROPRIATE FOR THE GLOBAL DUCHENNE COMMUNITY.
ADVOCACYPPMD'S ADVOCACY EFFORTS ARE DESIGNED TO ENSURE THE PATIENT'S VOICE IS HEARD IN WASHINGTON, DC, TO ENSURE THE LEGISLATIVE AGENDA AND ASSOCIATED POLICIES LEAD TO IMPROVEMENTS IN THE LIVES OF FAMILIES AFFECTED BY DUCHENNE AND REFLECT THE NEEDS OF THE WHOLE COMMUNITY. PPMD WORKS TO ENSURE THAT DUCHENNE RESEARCH, CARE, AND REGULATORY FLEXIBILITY REMAIN A HIGH PRIORITY FOR THE AGENCIES THAT HAVE THE POTENTIAL TO IMPACT DUCHENNE.
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 |
|---|
| Patricia A Furlong | FOUNDING CEO & PRESIDENT | 40 | $236,487 |
| Abby H Bronson | SENIOR VICE PRESIDENT, RESEARCH STRATEGY | 40 | $200,496 |
| Kimberly Galberaith | CHIEF OPERATING OFFICER | 40 | $175,694 |
| Kelly J Dougherty | SENIOR VICE PRESIDENT, FINANCE & ADMINISTRATION | 40 | $167,100 |
| Kaylan Moitoso | SENIOR VICE PRESIDENT, DEVELOPMENT | 40 | $158,908 |
| William P Nolan | SENIOR VICE PRESIDENT, COMMUNICATIONS | 40 | $151,560 |
| Ryan K Fischer | SENIOR VICE PRESIDENT, COMMUNITY ENGAGEMENT | 40 | $148,833 |
| Anne Kennedy | SENIOR VICE PRESIDENT, LEGISLATION & PUBLIC POLICY | 20 | $140,566 |
| Kathleen Kinnett | SENIOR VICE PRESIDENT, CLINICAL CARE | 20 | $121,471 |
| Ann Martin | DIRECTOR, THE DUCHENNE REGISTRY | 40 | $114,064 |
| Erin Dresnick | DIRECTOR, DEVELOPMENT | 40 | $104,863 |
| Howard Kaplan | BOARD MEMBER | 2 | $0 |
| Donna Saccamanno | BOARD MEMBER | 2 | $0 |
| Elizabeth White | BOARD MEMBER | 2 | $0 |
| Colin Rensch | BOARD MEMBER | 2 | $0 |
| Richard Klein | BOARD MEMBER | 2 | $0 |
| Christopher Jones | BOARD MEMBER | 2 | $0 |
| Joanna Becker Johnson | BOARD MEMBER | 2 | $0 |
| David N Hofstein | BOARD MEMBER | 2 | $0 |
| Lance Hester | BOARD MEMBER | 2 | $0 |
| Jonathan Finder Md | BOARD MEMBER | 2 | $0 |
| Christopher B Curran | BOARD MEMBER | 2 | $0 |
| Linda Cripe Md | BOARD MEMBER | 2 | $0 |
| Jeffrey Bigelow Md | BOARD MEMBER | 2 | $0 |
| Rasha Alnaibari | BOARD MEMBER | 2 | $0 |
| Christine L Piacentino | BOARD SECRETARY | 6 | $0 |
| John Killian | BOARD TREASURER | 8 | $0 |
| Anessa Fehsenfeld | BOARD CHAIRMAN | 8 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202032199349300328_public.xml