2023-08-07T15:52:18-05:00 2022-12-31 223604710 JAMES M WOOD CPA 603B OMNI DRIVE HILLSBOROUGH NJ 08844 990 2022-01-01 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 2023-08-07 1 PATRICIA FURLONG 999009999 0 JAMES M WOOD P00310420 9084311700 2023-08-01 X 2 AAL1 IAL1 2022 2023-04-26 12:10:37Z PATRICIA A FURLONG 1012 14TH STREET NW 500 WASHINGTON DC 20005 11975273 0 X WWW.PARENTPROJECTMD.ORG X 1997 OH END DUCHENNE MUSCULAR DYSTROPHY THROUGH RESEARCH, ADVOCACY, EDUCATION, & OPTIMAL MEDICAL CARE. 12 12 25 500 0 0 10454728 9959415 485989 798475 53606 41696 -137765 -46572 10856558 10753014 2509187 2629658 0 0 2350713 3241316 0 0 546628 2983464 5166667 7843364 11037641 3013194 -284627 10203860 8648654 1504388 768416 8699472 7880238 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 6532965 2629658 1006187 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. 2168132 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. 910780 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. 9611877 1 1 0 1 0 0 0 0 0 0 1 1 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 25 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 MS NH NJ NM 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 PRESIDENT AND CEO 40.00 X 292250 0 12648 RYAN FISCHER CHIEF ADVOCACY OFFICER 40.00 X 187206 0 14500 KAYLAN MOITOSO CHIEF BUSINESS OFFICER 40.00 X 184600 0 9443 RACHEL SCHRADER VICE PRESIDENT, CLINICAL CARE AND EDUCATION 40.00 X 153280 0 15124 ANN MARTIN VP, COMM RESEARCH AND GENETIC SERVICES 40.00 X 151910 0 7088 969246 0 58803 13 0 1 0 THE PHOENICIAN RESORT 6000 EAST CAMELBACK ROAD SCOTTSDALE AZ 85251 ANNUAL CONFERENCE VENUE 968428 SOMALOGIC INC 2945 WILDERNESS PLACE BOULDER CO 80301 BIOMARKER INITIATIVE 472550 FAEGRE DRINKER BIDDIE & REATH LLP 75 REMITTANCE DRIVE CHICAGO IL 60675 REGULATORY CONSULTING FEES 260564 ALL COLORS LLC 176 WOODBRIDGE AVE HIGHLAND PARK NJ 08904 SUPPLIES, PRINTING & STORAGE 242611 PROMETHEUS RESEARCH LLC 4820 EMPEROR BOULEVARD DURHAM NC 27703 DATABASE/INFORMATION TECHNOLOGY SERVICES 220409 12 2923010 425852 6610553 9959415 CONFERENCE INCOME 900099 483304 483304 FEES FOR SERVICE 900099 315171 315171 798475 9584 9584 1032199 1000087 32112 32112 32112 0 2923010 222172 -222172 -222172 RECOVERY OF PREVIOUSLY AWARDED GR 900099 175600 175600 175600 10753014 1006187 0 -212588 2538809 2538809 90849 90849 296765 252250 14838 29677 2434480 2097673 106536 230271 120484 103664 5350 11470 195298 168027 8690 18581 194289 167166 8627 18496 229806 47210 182596 19009 19009 926644 685306 213076 28262 17363 16807 556 54155 35280 11028 7847 88893 77760 8402 2731 531479 499967 10063 21449 432862 417650 15212 13698 11785 609 1304 16147 10295 4412 1440 PROGRAM SUPPLIES 1254124 1254124 0 0 MEALS 579008 571545 4145 3318 TECHNOLOGY 398103 130647 150840 116616 A/V AND PRODUCTION 341320 341320 0 0 264056 93743 115703 54610 11037641 9611877 879136 546628 2257144 1694546 5523580 1500181 830789 1782425 52041 87750 217861 197973 104025 77550 27206 26475 250000 2210501 1027774 989377 17465 159426 10203860 8648654 396783 463474 531753 62917 575852 242025 1504388 768416 X 7899231 6152121 800241 1728117 8699472 7880238 10203860 8648654 -284627 -534607 0 X X 0 1 X 1 0 X 9010932 11062420 8889998 9127402 9959415 48050167 9010932 11062420 8889998 9127402 9959415 48050167 17512373 30537794 1654 883 203 49538 9584 61862 329826 329826 48441855 2817604 0.63040 0.61110 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 27134 80000 107134 10930507 11037641 701882 175471 0 0 692649 478942 542168 701882 2415641 3623462 190000 30000 50000 107134 377134 173162 119736 135542 175471 603911 905867 13325 12440 16400 27134 69299 88006 62586 25420 16019 14964 1055 26475 REAL ESTATE INVESTMENT TRUST 250000 F U.S. TREASURY BONDS 1960501 F 2210501 AGREEMENT FOR FUTURE EQUITY 850479 C EQUITY SECURITIES 138898 F 989377 GRANT RECEIVED WITH CONDITIONS 87200 OPERATING LEASE LIABILITIES 154825 242025 10218407 -534607 -534607 10753014 0 10753014 11037641 0 11037641 0 11037641 0 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 24077 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 66772 0 0 0 0 0 0 90849 0 90849 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS 24077 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH- MEETING SUPPORT 20000 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH- PROTEIN MAPPING PROJECT 21452 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 25320 WIRE TRANSFER 0 0 0 0 0 0 0 PART III ACCOUNTING METHOD: SAM'S NIGHT 1349113 1349113 3223 WALT DISNEY WORLD EVENT 294568 294568 64620 33 1279329 1279329 154329 2923010 2923010 222172 222172 -222172 1 ANALYSIS GROUP 111 HUNTINGTON AVE 14TH BOSTON MA 02199 042727260 106667 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) 30645 0 RESEARCH- DORI EHR PROGRAM & 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) 641008 0 RESEARCH- ACTION NETWORK GRANT & CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS 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 DUKE UNIVERSITY A/R LOCKBOX PO BOX 602651 CHARLOTTE NC 28260 560532129 501(C)(3) 30163 0 RESEARCH- DORI EHR PROGRAM & CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS ENERGIZING & EMPOWERING MINDS PO BOX 1134 CARMEL IN 46082 474960300 10000 0 WELSTONE SUPPLEMENT FASEB 6120 EXECUTIVE BLVD STE 230 ROCKVILLE MD 20852 520700490 501(C)(3) 11500 0 RESEARCH- MEETING SUPPORT 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 LUCILE PACKARD FOUNDATION FOR CHILDREN'S HEALTH 400 HAMILTON AVE STE 340 PALO ALTO CA 94301 770003859 501(C)(3) 10000 0 CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS MYOGENE BIO LLC 807 WESTWOOD BLVD 376 LOS ANGELES CA 90024 831507849 50000 0 RESEARCH- MYOGENE DEVELOPMENT OF MYODYS45-55 NATIONWIDE CHILDRENS HOSPITAL 700 CHILDRENS DR COLUMBUS OH 43205 316056230 501(C)(3) 35000 0 CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS NEW YORK UNIVERSITY ONE PARK AVE 5TH FLOOR NEW YORK NY 10016 135562308 501(C)(3) 100000 0 RESEARCH- PEDIATRIC GENE THERAPY MEDICAL ETHICS NORTHWESTERN UNIVERSITY 633 CLARK ROOM G-547 EVANSTON IL 60208 362167817 501(C)(3) 73500 0 RESEARCH- WELLSTONE SUPPLEMENT OHIO STATE UNIVERSITY 1960 KENNY ROAD COLUMBUS OH 43210 316025986 501(C)(3) 30862 0 RESEARCH- DIVERSITY EQUITY AND INCLUSION INTERVIEWS REALLY USEFUL ROBOTS 26 SHADY BROOK DR LANGHORNE PA 19047 844830485 12117 0 RESEARCH- ASSESSMENT OF EFFICACY AND MAINTENANCE OF PASSIVE EXOSKELETONS WITH MOTOR ACTUATION ASSIST FOR PATIENTS WITH DUCHENNES MUSCULAR DYSTROPHY REGENTS OF THE UNIVERSITY OF CALIFORNIA-LA 1125 MURPHY HALL 405 HILGARD LOS ANGELES CA 90095 956006143 501(C)(3) 20000 0 RESEARCH- WELLSTONE SUPPLEMENT & CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS RESEARCH FOUNDATION FOR SUNY PO BOX 6000 BINGHAMTON NY 13902 141368361 501(C)(3) 50000 0 RESEARCH- DUK 2020 GRANT IMMUNE MODULATION TEAM JOSEPH 5745 W MAPLE RD STE 204 WEST BLOOMFIELD MI 48322 800613664 145000 0 CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS THE NEMOURS FOUNDATION 1600 ROCKLAND ROAD WILMINGTON DE 19803 590634433 501(C)(3) 92276 0 CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS THE REGENTS OF THE UNIVERSITY OF CALIFORNIA-BERKELEY 2195 HEARST AVE RM 130 MC 1103 BERKELEY CA 94720 946002123 501(C)(3) 86529 0 RESEARCH- WELLSTONE SUPPLEMENT TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA 3451 WALNUT STR 5TH FLOOR FRANKLIN BLDG PHILADELPHIA PA 19104 231352685 501(C)(3) 50000 0 CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS UNIVERSITY OF FLORIDA 219 GRINTER HALL GAINESVILLE FL 32611 596002052 501(C)(3) 271241 0 RESEARCH- PROTEIN MAPPING PROJECT, TRAVEL SUPPORT FOR NATURAL HISTORY STUDY AND WELLSTONE SUPPLEMENT UNIVERSITY OF FLORIDA FOUNDATION 1200 NEWELL DRIVE ARB R5-234 PO BOX 100267 GAINESVILLE FL 32610 590974739 501(C)(3) 436910 0 RESEARCH- BIOBANK, CARDIAC GENE THERAPY DEVELOPMENT SWEENEY, MEETING SUPPORT AND PRECLINICAL THERAPEUTIC ASSESSMENT LAB 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 PRESIDENT AND CEO 292250 0 0 0 0 0 11871 0 777 0 304898 0 0 0 RYAN FISCHER CHIEF ADVOCACY OFFICER 187206 0 0 0 0 0 6698 0 7802 0 201706 0 0 0 KAYLAN MOITOSO CHIEF BUSINESS OFFICER 184600 0 0 0 0 0 9314 0 129 0 194043 0 0 0 RACHEL SCHRADER VICE PRESIDENT, CLINICAL CARE AND ED 153280 0 0 0 0 0 7697 0 7427 0 168404 0 0 0 ANN MARTIN VP, COMM RESEARCH AND GENETIC SERVIC 151910 0 0 0 0 0 6959 0 129 0 158998 0 0 0 X 4 1000092 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 XII, LINE 2C THE PROCESS HAS NOT CHANGED FROM PRIOR YEAR.