2022-11-08T09:28:50-06:00 2021-12-31 223604710 JAMES M WOOD CPA 603B OMNI DRIVE HILLSBOROUGH NJ 08844 990 2021-01-01 311405490 THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC PARE 2012508440 1012 14TH STREET NW 500 WASHINGTON DC 20005 PATRICIA A FURLONG FOUNDING PRESIDENT/CEO 2012508440 2022-11-08 1 PATRICIA FURLONG 999009999 JAMES M WOOD P00310420 9084311700 2022-11-08 X 3 AAL1 IAL1 2021 2022-09-23 18:48:47Z PATRICIA A FURLONG 1012 14TH STREET NW 500 WASHINGTON DC 20005 11711367 0 X WWW.PARENTPROJECTMD.ORG X 1997 OH END DUCHENNE MUSCULAR DYSTROPHY THROUGH RESEARCH, ADVOCACY, EDUCATION, & OPTIMAL MEDICAL CARE. 12 12 19 500 0 0 8889998 10454728 403270 485989 1780 53606 264042 -137765 9559090 10856558 2689159 2509187 0 0 2739629 2350713 0 0 679607 2436850 2983464 7865638 7843364 1693452 3013194 7136426 10203860 1080993 1504388 6055433 8699472 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 4761246 2504187 172339 RESEARCHPPMD'S RESEARCH PROGRAM IDENTIFIES AND AGGRESSIVELY FUNDS THE MOST PROMISING NEAR AND LONG-TERM DUCHENNE RESEARCH ACROSS NUMEROUS THERAPEUTIC STRATEGIES; 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. IN ADDITION TO SIGNIFICANT PRE-CLINICAL AND ACADEMIC RESEARCH FUNDING, PPMD MAKES INVESTMENTS IN EARLY-STAGE BIOPHARMACEUTICAL COMPANIES TO CATALYZE DEVELOPMENT OF NOVEL THERAPIES TO TREAT DUCHENNE AND BECKER. THE DUCHENNE REGISTRYTHE DUCHENNE REGISTRY IS A PATIENT-REPORTED REGISTRY FOR INDIVIDUALS WITH DUCHENNE AND BECKER MUSCULAR DYSTROPHY AND CARRIER FEMALES. ESTABLISHED BY PPMD 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 PROGRAM STRIVES TO ENSURE THAT PEOPLE LIVING WITH DUCHENNE ARE LIVING LONGER, STRONGER LIVES, BY HELPING PROVIDE ACCESS TO EXPERT HEALTHCARE PROVIDERS, A COMPREHENSIVE TEAM OF SUB-SPECIALISTS, AND APPROVED TREATMENTS. PPMD 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. PPMD'S CERTIFIED DUCHENNE CARE CENTER PROGRAM (CDCC) HELPS TO ENSURE THAT CENTERS COMPLY WITH THE STANDARDS OF CARE AND SERVICES THAT HAVE BEEN ESTABLISHED IN THE DUCHENNE CARE GUIDELINES. ALL CERTIFIED DUCHENNE CARE CENTERS HAVE MET THE REQUIREMENTS FOR, AND AGREE TO PROVIDE, STANDARDIZED CARE AND SERVICES. 861049 EDUCATIONPPMD'S EDUCATION INITIATIVES INCREASE 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 NATIONAL AND INTERNATIONAL ORGANIZATIONS TO DEVELOP AND DISSEMINATE EDUCATIONAL RESOURCES APPROPRIATE FOR THE GLOBAL DUCHENNE COMMUNITY. 770492 5000 ADVOCACYPPMD'S ADVOCACY EFFORTS ARE FOCUSED ON ADVANCING CARE AND TREATMENTS FOR DUCHENNE BY LEVERAGING FEDERAL RESOURCES, BUILDING PARTNERSHIPS, AND ADVANCING REGULATORY PROCEDURES AND INFRASTRUCTURE. WE EMPOWER ADVOCATES WITH THE TOOLS AND INFORMATION TO ENGAGE WITH CONGRESSIONAL REPRESENTATIVES TO FOSTER DUCHENNE CHAMPIONS WITHIN CONGRESS AND TO SUPPORT LEGISLATION AND REGULATORY POLICIES, ENSURING THAT DUCHENNE PRIORITIES ARE REFLECTED ACROSS ALL GOVERNMENT AGENCIES. 6392787 1 1 0 1 0 0 0 0 0 0 1 0 1 0 1 0 1 0 0 0 1 1 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 33 0 1 19 1 0 0 0 0 0 0 0 0 0 0 0 0 X 12 12 0 0 0 0 0 0 0 1 0 0 0 1 1 1 1 1 1 1 1 0 AL CA FL KY MD MN NH NJ NY OR PA SC WV X X THE ORGANIZATION 2012508440 1012 14TH STREET NW 500 WASHINGTON DC 20005 ANESSA FEHSENFELD BOARD CHAIRMAN 8.00 X X 0 0 0 GRETCHEN EGNER VICE CHAIR 8.00 X X 0 0 0 LANCE HESTER TREASURER 6.00 X X 0 0 0 DEANNE FRIAR SECRETARY 6.00 X X 0 0 0 DAVID N HOFSTEIN EXECUTIVE OVERSIGHT CHAIR 6.00 X 0 0 0 RASHA ALNAIBARI BOARD MEMBER 2.00 X 0 0 0 JEFF BIGELOW BOARD MEMBER 2.00 X 0 0 0 LINDA CRIPE BOARD MEMBER 2.00 X 0 0 0 CHRISTOPHER JONES BOARD MEMBER 2.00 X 0 0 0 RICHARD KLEIN BOARD MEMBER 2.00 X 0 0 0 COLIN RENSCH BOARD MEMBER 2.00 X 0 0 0 BETH WHITE BOARD MEMBER 2.00 X 0 0 0 PATRICIA A FURLONG FOUNDING CEO & PRESIDENT 40.00 X 223857 0 9869 NICOLE ARMSTRONG SR. DIRECTOR, COMM RESEARCH AND GENETIC SERVICES 40.00 X 114000 0 7815 ERIC CAMINO VICE PRESIDENT, RESEARCH & CLINICAL INNOVATION 40.00 X 125950 0 21713 ERIN DRESNICK DIRECTOR, DEVELOPMENT 40.00 X 115000 0 8446 RYAN FISCHER CHIEF ADVOCACY OFFICER 40.00 X 172041 0 13639 KIMBERLY GALBERAITH CREATIVE DIRECTOR 40.00 X 129280 0 35865 NICOLE HERRING VP, DEV AND COMM ENGAGEMENT 40.00 X 122995 0 30213 ANN MARTIN VP, COMM RESEARCH AND GENETIC SERVICES 40.00 X 141300 0 6729 KAYLAN MOITOSO CHIEF BUSINESS OFFICER 40.00 X 190161 0 9654 RACHEL SCHRADER VICE PRESIDENT, CLINICAL CARE AND EDUCATION 40.00 X 147903 0 13494 AMANDA WILKISON SR. DIRECTOR, CLINICAL CARE AND EDUCATION 40.00 X 107562 0 11644 1590049 0 169081 11 0 1 0 JOHN R DUDLEY PRODUCTIONS LLC 9627 PERCUSSION WAY VIENNA VA 22182 A/V AND PRODUCTION SERVICES 206116 PROMETHEUS RESEARCH LLC PO BOX 41125 SAN JOSE CA 95160 DATABASE/ INFORMATION TECHNOLOGY SERVICE 204428 YOUR PART-TIME CONTROLLER 1500 WALNUT SUITE 1200 PHILADELPHIA PA 19102 FINANCIAL CONSULTING SERVICES 186960 FAEGRE DRINKER BIDDIE & REATH LLP 2200 WELLS FARGO CENTER 90 S 7TH ST MINNEAPOLIS MN 55402 LEGAL AND REGULATORY CONSULTING 185068 UNITED HEALTH CARE 1 RESEARCH DRIVE SHELTON CT 06484 HEALTH INSURANCE 126145 8 2050953 447660 7956115 720702 10454728 CONFERENCE INCOME 900099 313650 313650 FEES FOR SERVICE 900099 172339 172339 485989 49538 49538 720702 716634 4068 4068 4068 0 2050953 138175 -138175 -138175 OTHER INCOME 900099 410 410 410 10856558 490467 0 -88637 X 2388081 2388081 121106 121106 226837 192811 11342 22684 1755419 1423887 71841 259691 88743 72379 3727 12637 133724 109060 5603 19061 145990 119069 6132 20789 40109 4300 35809 17595 17595 1198694 899710 260320 38664 126360 37870 83490 5000 873281 564953 91195 217133 127211 27278 90782 9151 104093 97824 3460 2809 154938 154693 245 11245 7896 1537 1812 24095 11789 8801 3505 PROGRAM SUPPLIES 108185 89050 7120 12015 FEES & PERMITS 67520 40912 23734 2874 BANK CHARGES 60511 2 15666 44843 TELEPHONE 23405 8325 12758 2322 46222 21792 20058 4372 7843364 6392787 770970 679607 4937401 2257144 535134 5523580 355746 830789 29158 52041 105167 217861 91898 64692 24581 27206 260308 250000 849880 1027774 39051 17465 7136426 10203860 115946 396783 517387 531753 447660 575852 1080993 1504388 X 5224854 7899231 830579 800241 6055433 8699472 7136426 10203860 3013194 -369155 0 X X 0 1 X 1 0 X 9136279 9010932 11062420 8889998 9127402 47227031 9136279 9010932 11062420 8889998 9127402 47227031 18132394 29094637 1560 1654 883 203 49538 53838 329826 329826 47610695 2485560 0.61110 0.68630 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 16400 33600 50000 7793364 7843364 542168 135542 0 0 584412 692649 478942 542168 2298171 3447257 230000 190000 30000 50000 500000 146103 173162 119736 135542 574543 861815 14710 13325 12440 16400 56875 75879 50585 25294 16019 14107 1912 27206 AGREEMENT FOR FUTURE EQUITY 350480 C EQUITY SECURITIES 677294 F 1027774 LOAN PAYABLE TO SMALL BUSINESS ADMINISTRATION 425852 GRANT RECEIVED WITH CONDITIONS 150000 575852 10487403 -369155 -369155 10856558 0 10856558 7843364 0 7843364 0 7843364 0 NORTH AMERICA 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 51737 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 69370 0 0 0 0 0 0 121107 0 121107 NORTH AMERICA RESEARCH- FELLOWSHIP AWARD 44237 WIRE TRANSFER 0 NORTH AMERICA CARE EDUCATION MEETING SUPPORT 7500 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH- BIOMARKER INITIATIVE 60423 WIRE TRANSFER 0 0 0 0 0 0 0 PART III ACCOUNTING METHOD: SAM'S NIGHT 735564 735564 2300 WALT DISNEY WORLD EVENT 285479 285479 26555 33 1029910 1029910 109320 2050953 2050953 138175 138175 -138175 1 EVERYLIFE FOUNDATION FOR RARE DISEASES 1012 14TH STREET NW WASHINGTON DC 20005 264614274 501(C)(3) 20000 0 RESEARCH PROGRAM- AWARD FOR GENETICS FELLOWSHIP AMERICAN COLLEGE OF MEDICAL GENETICS AND GENOMICS 7101 WISCONSIN AVENUE SUITE 1101 BETHESDA MD 20814 521774227 501(C)(6) 63510 0 RESEARCH GRANT- NYS NEWBORN SCREENING ANALYSIS GROUP INC 111 HUNTINGTON AVE 14TH FLOOR BOSTON MA 02199 042727260 40000 0 RESEARCH- SUPPORT OF COLLECTIVE ANALYSIS TRAJECTORY PROJECT ARKANSAS CHILDREN'S HOSPITAL 1 CHILDRENS WAY SLOT 512-15 LITTLE ROCK AR 72202 710568795 501(C)(3) 39140 0 DYSTROPHINOPATHY AND THE BRAIN PROJECT- PILOT OF BELLS TOOL CINCINNATI CHILDREN'S HOSPITAL MC MLC 4900 CINCINNATI OH 45229 310833936 501(C)(3) 75000 0 CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS CINCINNATI CHILDREN'S HOSPITAL MC MLC 4900 CINCINNATI OH 45229 310833936 501(C)(3) 29836 0 INTER-INSTITUTIONAL COLLABORATION GRANT CRITICAL PATH INSTITUTE 1730 E RIVER ROAD SUITE 200 TUCSON AZ 85718 201991334 501(C)(3) 100000 0 RESEARCH- SUPPORT OF DUCHENNE REGULATORY SCIENCE CONSORTIUM CURATORS OF THE UNIVERSITY OF MISSOURI PO BOX 807012 KANSAS CITY MO 64180 436003859 31500 0 RESEARCH- GENE THERAPY INITIATIVE HEALTH RESEARCH INC 150 BROADWAY SUITE 560 MENANDS NY 12204 141402155 450000 0 RESEARCH- NYS NEWBORN SCREENING PILOT INSTITUTE ADVANCE CLINICAL TRIALS FOR CHILDREN 9211 CORPORATE BLVD ROCKVILLE MD 20850 812076517 18200 0 RESEARCH- MASTER PROTOCOL FOR DMD KENNEDY KRIEGER INSTITUTE 707 NORTH BROADWAY 4TH FL TOWER BALTIMORE MD 21205 521524967 501(C)(3) 10000 0 CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS NATIONWIDE CHILDREN'S HOSPITAL 700 CHILDRENS DR COLUMBUS OH 43205 316056230 501(C)(3) 40000 0 RESEARCH- MEETING SUPPORT NEW YORK UNIVERSITY ONE PARK AVE 5TH FLOOR NEW YORK NY 10016 135562308 501(C)(3) 75000 0 RESEARCH GRANT- GENE THERAPY INITIATIVE NORTHWESTERN UNIVERSITY 633 CLARK ROOM G-547 EVANSTON IL 60208 362167817 501(C)(3) 120000 0 RESEARCH PROGRAM- CARDIAC INITIATIVE OHIO STATE UNIVERSITY 1960 KENNY ROAD COLUMBUS OH 43210 316025986 121644 0 RESEARCH PROGRAM- CARDIAC INITIATIVE (GENE EDITING TO CORRECT HEART FUNCTION) RESEARCH FOUNDATION FOR SUNY UNIVERSITY OF MISSOURI AR PO BOX 6000 BINGHAMTON NY 13902 141368361 501(C)(3) 226450 0 RESEARCH PROGRAM- GENE THERAPY INITIATIVE RESEARCH INST AT NATIONWIDE CHILDREN'S DEPT 781653 PO BOX 78000 DETROIT MI 48278 316056230 40000 0 RESEARCH PROGRAM- DMD CARRIER STUDY THE NEMOURS FOUNDATION 1600 ROCKLAND RD WILMINGTON DE 19803 590634433 501(C)(3) 41353 0 CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS THE REGENTS OF THE UNIVERSITY OF CALIFORNIA 2195 HEARST AVE RM 130 MC 1103 BERKELEY CA 94720 946002123 501(C)(3) 57688 0 RESEARCH PROGRAM- WELLSTONE SUPPLEMENT UNIVERSITY OF FLORIDA 219 GRINTER HAL GAINESVILLE FL 32611 596002052 501(C)(3) 263693 0 RESEARCH PROGRAM- WELLSTONE SUPPLEMENT UNIVERSITY OF FLORIDA 219 GRINTER HAL GAINESVILLE FL 32611 596002052 501(C)(3) 7137 0 RESEARCH GRANT- TRAVEL SUPPORT FOR NATURAL HISTORY STUDY UNIVERSITY OF FLORIDA FOUNDATION 1200 NEWELL DRIVE ARB R5-234 PO BOX 100267 GAINESVILLE FL 32610 590974739 501(C)(3) 368927 0 RESEARCH PROGRAM- CARIDIAC INITIATIVE AND BIOBANK SUPPORT 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 223527 0 0 0 330 0 9073 0 796 0 233726 0 0 0 KAYLAN MOITOSO CHIEF BUSINESS OFFICER 189831 0 0 0 330 0 9525 0 129 0 199815 0 0 0 RYAN FISCHER CHIEF ADVOCACY OFFICER 171711 0 0 0 330 0 6137 0 7502 0 185680 0 0 0 KIMBERLY GALBERAITH CREATIVE DIRECTOR 128950 0 0 0 330 0 7016 0 28849 0 165145 0 0 0 RACHEL SCHRADER VICE PRESIDENT, CLINICAL CARE AND ED 147573 0 0 0 330 0 6327 0 7167 0 161397 0 0 0 NICOLE HERRING VP, DEV AND COMM ENGAGEMENT 122672 0 0 0 323 0 6516 0 23697 0 153208 0 0 0 X 4 720702 FMV ON DATE OF GIFT 0 1 0 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 IX, LINE 11G CONSULTANTS: PROGRAM SERVICE EXPENSES 899,710. MANAGEMENT AND GENERAL EXPENSES 260,320. FUNDRAISING EXPENSES 38,664. TOTAL EXPENSES 1,198,694. FORM 990, PART XII, LINE 2C THE PROCESS HAS NOT CHANGED FROM PRIOR YEAR.