2020-08-06T12:13:34-05:00 2019-12-31 223604710 JAMES M WOOD CPA 603B OMNI DRIVE HILLSBOROUGH NJ 08844 990 2019-01-01 311405490 THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC PARE 2012508440 401 HACKENSACK AVENUE 9TH FLOOR HACKENSACK NJ 07601 PATRICIA A FURLONG FOUNDING PRESIDENT/CEO 2012508440 2020-08-06 1 JAMES M WOOD P00310420 9084311700 2020-08-06 X 173.161.221.185 2020-08-06 08:29:39 ED P 2D72A1720A40BAF8C6E91116F587AF915797A6E6 2D72A1720A40BAF8C6E91116F587AF915797A6E6 2019 2021-01-29 14:40:06Z PATRICIA A FURLONG 401 HACKENSACK AVENUE 9TH FLOOR HACKENSACK NJ 07601 12535654 0 X WWW.PARENTPROJECTMD.ORG X 1997 OH END DUCHENNE MUSCULAR DYSTROPHY THROUGH RESEARCH, ADVOCACY, EDUCATION, & OPTIMAL MEDICAL CARE. 15 15 26 1103 0 0 9010932 11218006 443499 536156 353 2232 -383625 -320727 9071159 11435667 2393393 4455275 0 0 2712295 3127518 0 0 780442 3582547 3270195 8688235 10852988 382924 582679 5732769 4713542 1963776 361870 3768993 4351672 X 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. 0 0 7647985 4455275 227711 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. 1407262 308445 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. 420166 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. 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INVESTIGATION OF THE EFFICIENCY FOR EXON SKIPPING AND MODE OF ENTRY INTO MUSCLE BY ANTISENSE CONSTRUCTS OF DIFFERENT CHEMISTRIES PART I, LINE 2: THE ORGANIZATION HAS A STANDARDIZED GRANT TEMPLATE THAT REQUIRES REGULAR PERIODIC REPORTING OF THE USE OF GRANT FUNDS AND A PROGRESS REPORT OF THE GRANT ACTIVITIES. X X 0 0 0 0 0 0 0 0 0 PATRICIA A FURLONG FOUNDING CEO & PRESIDENT 236487 0 0 0 0 0 9579 0 1122 0 247188 0 0 0 KIMBERLY GALBERAITH CHIEF OPERATING OFFICER 175694 0 0 0 0 0 9230 0 27079 0 212003 0 0 0 ABBY H BRONSON SENIOR VICE PRESIDENT, RESEARCH STRA 200496 0 0 0 0 0 8201 0 14969 0 223666 0 0 0 KELLY J DOUGHERTY SENIOR VICE PRESIDENT, FINANCE & ADM 167100 0 0 0 0 0 8046 0 1870 0 177016 0 0 0 RYAN K FISCHER SENIOR VICE PRESIDENT, COMMUNITY ENG 148833 0 0 0 0 0 5316 0 7200 0 161349 0 0 0 KAYLAN MOITOSO SENIOR VICE PRESIDENT, DEVELOPMENT 158908 0 0 0 0 0 8179 0 454 0 167541 0 0 0 WILLIAM P NOLAN SENIOR VICE PRESIDENT, COMMUNICATION 151560 0 0 0 0 0 7594 0 454 0 159608 0 0 0 ANNE KENNEDY SENIOR VICE PRESIDENT, LEGISLATION & 140566 0 0 0 0 0 7370 0 12082 0 160018 0 0 0 X 18 779245 FMV ON DATE OF GIFT 0 1 1 PART I, LINE 32B: THE ORGANIZATION USES CARS FOR CAUSES, ANOTHER TAX-EXEMPT ORGANIZATION, WHEN A VEHICLE IS DONATED. THE DONOR DONATES THE VEHICLE TO CARS FOR CAUSES AND THE PROCEEDS OF THE SALE ARE FORWARDED TO THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH, INC. FORM 990, PART VI, SECTION A, LINE 8B NO COMMITTEE HAS AUTHORITY TO ACT ON BEHALF OF THE ENTIRE BOARD. FORM 990, PART VI, SECTION B, LINE 11B THE 990 IS COMPLETED BY AN INDEPENDENT CPA FIRM AND A DRAFT IS PRESENTED TO THE BOARD MEMBERS FOR REVIEW. THE BOARD THEN VOTES TO APPROVE THE 990 BEFORE IT IS SIGNED AND MAILED. IF THERE ARE ANY COMMENTS OR QUESTIONS THE ISSUE IS RESOLVED PRIOR TO FILING THE 990 WITH THE IRS. FORM 990, PART VI, SECTION B, LINE 12C THE SECRETARY IS RESPONSIBLE TO ENSURE EACH BOARD MEMBER HAS COMPLETED THEIR WRITTEN STATEMENT ANNUALLY. FORM 990, PART VI, SECTION B, LINE 15 PARENT PROJECT MUSCULAR DYSTROPHY CEO COMPENSATION REVIEW PROCESS THE PRESIDENT AND CEO IS THE PRINCIPAL REPRESENTATIVE OF THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH ("PPMD"), AND THE PERSON RESPONSIBLE FOR THE EFFICIENT OPERATION OF THE ORGANIZATION. THE ANNUAL PROCESS FOR DETERMINING HIS/HER COMPENSATION IS AS FOLLOWS: PPMD SHALL [EITHER THE FULL BOARD OR A COMPENSATION COMMITTEE/EXECUTIVE COMMITTEE] ANNUALLY EVALUATE THE PRESIDENT AND CEO ON HIS/HER PERFORMANCE, AND ASK FOR HIS/HER INPUT ON MATTERS OF PERFORMANCE AND COMPENSATION. BOARD APPROVAL. THE BOARD COMMITTEE WILL OBTAIN RESEARCH AND INFORMATION TO MAKE A RECOMMENDATION TO THE FULL BOARD FOR THE COMPENSATION (SALARY AND BENEFITS) OF THE PRESIDENT AND CEO BASED ON A REVIEW OF COMPARABILITY DATA. THIS DATA MAY INCLUDE THE FOLLOWING: - SALARY AND BENEFIT COMPENSATION STUDIES BY INDEPENDENT SOURCES; - WRITTEN JOB OFFERS FOR POSITIONS AT SIMILAR ORGANIZATIONS; - DOCUMENTED TELEPHONE CALLS ABOUT SIMILAR POSITIONS AT BOTH NONPROFIT AND FOR-PROFIT ORGANIZATIONS; AND - INFORMATION OBTAINED FROM THE IRS FORM 990 FILINGS OF SIMILAR ORGANIZATIONS. FORM 990, PART VI, SECTION C, LINE 19 AVAILABLE UPON REQUEST. FORM 990. PART XII, LINE 2C THE PROCESS HAS NOT CHANGED FROM PRIOR YEAR.