2017-10-05T07:42:11-05:00 2016-12-31 223604710 JAMES M WOOD CPA 603B OMNI DRIVE HILLSBOROUGH NJ 08844 990 2016-01-01 311405490 THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC PARE 2012508440 401 HACKENSACK AVENUE NO 9TH FL HACKENSACK NJ 07601 PATRICIA A FURLONG FOUNDING PRESIDENT/CEO 2012508440 2017-10-05 JAMES M WOOD P00310420 9084311700 2017-09-13 X 173.161.221.185 2017-10-05 08:39:46 ED P 11A0CE5EAC0736E3E1D3BC6816C475E194C3DA12 11A0CE5EAC0736E3E1D3BC6816C475E194C3DA12 2016 2021-01-29 14:40:06Z PATRICIA A FURLONG 401 HACKENSACK AVENUE NO 9TH FL HACKENSACK NJ 07601 9455293 0 X WWW.PARENTPROJECTMD.ORG X 1997 OH END DUCHENNE MUSCULAR DYSTROPHY THROUGH RESEARCH, ADVOCACY, EDUCATION, & OPTIMAL MEDICAL CARE. 10 10 22 1038 0 0 8725485 8218916 161900 364129 -14278 -874 -197600 -363279 8675507 8218892 3023969 2682986 0 0 2194247 2269409 0 0 480472 2486578 2608269 7704794 7560664 970713 658228 2735082 4507799 236923 1351412 2498159 3156387 X THE PARENT PROJECT FOR MUSCULAR DYSTROPHY'S MISSION IS TO END DUCHENNE MUSCULAR DYSTROPHY. WE ACCELERATE RESEARCH, RAISE OUR VOICES IN WASHINGTON, DEMAND OPTIMAL CARE FOR ALL YOUNG MEN, AND EDUCATE THE GLOBAL COMMUNITY. 0 0 4630512 2479536 364129 RESEARCH - PPMD'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; ENCOURAGES AND SUPPORTS THE PHARMACEUTICAL INDUSTRY TO MAXIMIZE THEIR INVESTMENT IN DUCHENNE. 1472310 203450 EDUCATION -PPMD'S EDUCATION INITIATIVE INCREASES RECOGNITION OF MUSCLE WEAKNESS AMONG HEALTHCARE PROFESSIONALS AND PROMOTES EARLY DIAGNOSIS; SHARES UP-TO-DATE INFORMATION ABOUT TREATMENT AND CARE OPTIONS WITH ALL MEMBERS OF THE DUCHENNE COMMUNITY; AND RAISES AWARENESS ABOUT DUCHENNE AND PROVIDES EDUCATIONAL MATERIALS TO THE GLOBAL COMMUNITY.CARE-PPMD'S CARE INITIATIVE IDENTIFIES GAPS IN CARE FOR YOUNG MEN WITH DUCHENNE AND WORKS WITH CLINICIANS AND OTHER HEALTH CARE PROFESSIONALS ACCROSS THE GLOBE TO ENSURE ALL DUCHENNE PATIENTS HAVE ACCESS TO OPTIMAL CARE.DUCHENNE CONNECT-PPMD'S DUCHENNE CONNECT INITIATIVE PROVIDES A SUPPORTIVE ENVIRONMENT IN WHICH PEOPLE AFFECTED BY DUCHENNE CAN SHARE NEEDS, CONCERNS, AND COMMON EXPERIENCES. DUCHENNE CONNECT WORKS COLLABORATIVELY WITH STAKEHOLDERS WHO MAKE UP THE DUCHENNE POPULATION AND PARTICIPATES ACTIVELY AND EFFECTIVELY IN THE INTERNATIONAL DUCHENNE COMMUNITY. 450046 ADVOCACY - PPMD'S ADVOCACY EFFORTS ARE DESIGNED TO ENSURE THE PATIENT'S VOICE IS HEARD IN WASHINGTON, DC, SO 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 AND CLINICAL TRIALS REMAIN A HIGH PRIORITY WITH FEDERAL REGULATORY AGENCIES SO THEY ADDRESS DUCHENNE-SPECIFIC CONCERNS IN THEIR DECISION-MAKING. 6552868 1 1 0 1 0 0 0 0 0 0 1 0 0 0 0 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 57 0 1 22 1 0 0 0 0 0 0 0 0 0 0 X 10 10 0 0 0 0 0 0 0 1 0 0 0 1 1 1 1 1 1 0 0 0 AZ AR CA CO CT FL GA IL IN IA KY LA MA MD MA MI MN MS MO NE NH NJ NY OH PA SC TN TX UT VA WA WI WY X X THE ORGANIZATION 2012508440 401 HACKENSACK AVENUE NO 9TH FL HACKENSACK NJ 07601 ANESSA GAYDOU FEHSENFELD BOARD CHAIRMAN 15.00 X X 0 0 0 JOHN KILLIAN BOARD TREASURER 15.00 X X 0 0 0 CHRISTINE L PIACENTINO BOARD SECRETARY 8.00 X X 0 0 0 LAWRENCE CHARNAS BOARD MEMBER 2.00 X 0 0 0 CATHERINE JONES COLLINS BOARD MEMBER 2.00 X 0 0 0 LINDA CRIPE BOARD MEMBER 2.00 X 0 0 0 JONATHAN FINDER BOARD MEMBER 2.00 X 0 0 0 LANCE HESTER BOARD MEMBER 2.00 X 0 0 0 JOANNA JOHNSON BOARD MEMBER 2.00 X 0 0 0 ELLEN WAGNER BOARD MEMBER 2.00 X 0 0 0 PATRICIA A FURLONG FOUNDING PRESIDENT & CEO 40.00 X 198150 0 7419 KIMBERLY GALBERAITH CHIEF OPERATING OFFICER 40.00 X 155363 0 26494 ABBY H BRONSON SENIOR VICE PRESIDENT, RESEARCH STRATEGY 40.00 X 167949 0 15641 ANNE M KENNEDY SENIOR VICE PRESIDENT, LEGISLATION & PUBLIC POLICY 40.00 X 141930 0 15410 KAYLAN M MOITOSO SENIOR VICE PRESIDENT, DEVELOPMENT 40.00 X 137796 0 5816 KATHLEEN J KINNETT SENIOR VICE PRESIDENT, CLINICAL CARE 40.00 X 137708 0 4608 RYAN K FISCHER SENIOR VICE PRESIDENT, COMMUNITY ENGAGEMENT 40.00 X 108039 0 9095 WILLIAM P NOLAN JR SENIOR VICE PRESIDENT, COMMUNICATIONS 40.00 X 109690 0 4488 1156625 0 88971 8 0 1 0 FAEGRE BAKER DANIELS LLP 75 REMITTANCE DRIVE DEPT 6952 CHICAGO IL 60675 RESEARCH AND EDUCATION SERVICES 172682 1 858699 7360217 886384 8218916 CONFERENCE FEES 900099 364129 364129 364129 3220 3220 869028 873122 -4094 -4094 -4094 0 858699 363279 -363279 -363279 8218892 364129 0 -364153 2647986 2647986 35000 35000 521462 417391 41137 62934 1527655 1354954 112909 59792 71758 62756 5001 4001 148534 129923 10368 8243 21919 20075 1844 77224 66269 6097 4858 118282 103537 8207 6538 357434 315894 16255 25285 665316 665185 131 28381 11409 8431 8541 115271 25279 89992 CONSULTING EXPENSE 376770 280242 62778 33750 OUTSIDE SERVICES 253633 248708 4125 800 BANK CHARGES 162533 0 14834 147699 OFFICE EXPENSES & SUPPL 63981 23164 32371 8446 367525 145096 112844 109585 7560664 6552868 527324 480472 546987 643461 1504956 2804101 347742 742208 37803 13393 165379 84683 138388 86746 69511 51642 62704 168311 2735082 4507799 130531 82402 106392 500000 0 769010 236923 1351412 X 2208424 1822424 289735 1333963 2498159 3156387 2735082 4507799 658228 0 X X 0 1 X 1 0 X 6099492 5904768 5992822 8725485 8583045 35305612 6099492 5904768 5992822 8725485 8583045 35305612 5687260 29618352 2310 1984 904 377 3220 8795 35314407 0.83870 0.84440 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 214000 214000 6338868 6552868 477643 119411 0 0 454363 467950 535240 477643 1935196 2902794 320912 284296 264216 214000 1083424 113591 116988 133810 119411 483800 725700 6180 773 5407 97987 56501 41486 34221 29472 4749 51642 8218892 0 8218892 0 8218892 7560664 0 7560664 0 7560664 0 EUROPE 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 35000 0 0 0 0 0 0 35000 0 35000 EUROPE ISBMR 14TH COURSE 10000 EUROPE AON-INDUCED EXON SKIPPING 25000 2 0 0 0 0 0 0 SAM'S NIGHT 201726 201726 4690 MITCHELL'S RUN THRU ROCKFORD 72840 72840 8438 54 584133 584133 350151 858699 858699 363279 363279 -363279 1 CATABASIS PHARMACEUTICALS INC ONE KENDALL SQUARE CAMBRIDGE MA 02139 263687168 8333 CLINICAL TRIAL SUPPORT LEIDOS INC PO BOX 223058 PITTSBURGH PA 15251 953630868 2768 ON PAR TRAJECTORY ANALYSIS PROJECT RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITAL 700 CHILDRENS DRIVE COLUMBUS OH 43205 316056230 501(C)(3) 355329 DETERMINE INCIDENCE & PROGNOSIS OF CLINICALLY SIGNIFICANT CARDIAC, SKELETAL MUSCLE & COGNITIVE IMPAIRMENT IN CARRIERS OF DMD & BMD RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITAL 700 CHILDRENS DRIVE COLUMBUS OH 43205 316056230 501(C)(3) 30000 NCH/WELLSTONE/OSU MYOLOGY UNIVERSITY OF WASHINGTON GRANT AND CONTRACT ACCOUNTING 12455 COLLECTIONS DRIVE CHICAGO IL 60693 916001537 501(C)(3) 35408 IN SILICO RE-ENGINEERED MICRO-DYSTROPHIN: EXPANDING A NOVEL APPROACH TO EVADE T-CELL IMMUNE RESPONSES IN DMD PATIENTS. IOWA STATE UNIVERSITY OF SCIENCE SPONSORED PROGRAMS ACCOUNTING 3609 ADMINISTRATIVE SERVICES AMES IA 50011 426004224 501(C)(3) 58333 QUERCETIN-BASED THERAPIES WITH IMMEDIATE APPLICATION FOR DYSTROPHIC MUSCLE UNIVERSITY OF ARIZONA 1303 E UNIVERSITY BLVD BOX 3 TUCSON AZ 85719 742652689 501(C)(3) 77986 EUREKA CERTIFICATE COURSE UNIVERSITY OF FLORIDA PO BOX 100267 GAINESVILLE FL 32610 596002052 501(C)(3) 219996 FLORIDA COMBINED THERAPEUTICS TALEM TECHNOLOGIES LLC 400 RENAISSANCE CENTER SUITE 2900 DETROIT MI 48243 800915218 19227 WHEELCHAIR METHODS AND METRICS LEE SWEENEY CONSULTING LLC 9210 NW 59TH ST GAINESVILLE FL 32653 262195280 36000 PROJECT CATALYST MACHINA CARNIS CONSULTING LLC 9210 NW 59TH ST GAINESVILLE FL 32653 472577237 96000 PROJECT CATALYST UNIVERSITY OF FLORIDA 219 GRINTER HALL PO BOX 115500 GAINESVILLE FL 32611 596002052 501(C)(3) 10000 NEW DIRECTIONS CONFERENCE EGL GENETIC DIAGNOSTICS LLC DEPT 2612 POBOX 11407 BIRMINGHAM AL 35246 474383500 203360 EMORY GENETICS LAB TESTING CRITICAL PATH INSTITUTE 1730 E RIVER ROAD SUITE 200 TUCSON AZ 85718 201991334 501(C)(3) 325000 C-PATH SPONSORED RESEARCH NORTHWESTERN UNIVERSITY 633 CLARK ROOM G-547 EVANSTON IL 60208 362167817 501(C)(3) 50600 WELLSTONE SUPPLEMENT UNIVERSITY OF CALIFORNIA - LOS ANGELES UC REGENTS 1125 MURPHY HALL BOX 957089 405 HILGARD AVE LOS ANGELES CA 90095 956006143 501(C)(3) 109754 WELLSTONE SUPPLEMENT UNIVERSITY OF FLORIDA 219 GRINTER HALL PO BOX 115500 GAINESVILLE FL 32611 596002052 501(C)(3) 96250 WELLSTONE SUPPLEMENT SOMALOGIC INC 2945 WILDERNESS PLACE BOULDER CO 80301 522195896 15060 SOMALOGIC DATA ANALYSIS THE OHIO STATE UNIVERSITY 1960 KENNY ROAD COLUMBUS OH 43210 316025986 501(C)(3) 11267 NF-KB FUNCTION IN DMD CARDIOMYOPATHY CARDERO THERAPEUTICS INC 12774 LEANDER DRIVE LOS ALTOS HILLS CA 94022 70000 MANUFACTURE OF EPICATECHIN CAPSULES UNIVERSITY OF CALIFORNIA DAVIS REGENTS UC DAVIS BOX 989062 WEST SACRAMENTO CA 95798 946036494 501(C)(3) 104421 A SINGLE-CENTER DOSE-RAGING PILOT STUDY OF (+)-EPICATECHIN (CARDERO THERAPEUTICS, INC.) IN NON-AMBULATORY CHILDREN & ADOLESCENTS WITH DUCHENNE MUSCULAR DYSTROPHY & PRE-SYMPTOMATIC CARDIAC DYSFUNCTION. NEW JERSEY INSTITUTE FOR TECHNOLOGY - GRANTS AND CONTRACTS ACCT UNIVERSITY HEIGHTS NEWARK NJ 07102 226000910 501(C)(3) 150000 TRANSLATION OF AN UPPER EXTREMITY EXOSKELETON TO COMMUNITY USE FOR INDIVIDUALS WITH DUCHENNE MUSCULAR DYSTROPHY HOPE FOR GABE FOUNDATION 1036 BALDWIN LANE BIRMINGHAM AL 35242 271240341 501(C)(3) 10000 GENERAL SUPPORT LELAND STANFORD JUNIOR UNIVERSITY 3160 PORTER DRIVE SUITE 100 PALO ALTO CA 94304 941156365 501(C)(3) 6100 COLLECTION OF CONFIRMED DMD POSITIVE & PRESUMPTIVE NEGATIVE NEWBORN SCREENING DBS SPECIMENS CHILDREN'S RESEARCH INSTITUTE 801 ROEDER ROAD SUITE 511 SILVER SPRING MD 20910 521654463 501(C)(3) 55179 INVESTIGATION OF THE EFFICIENCY FOR EXON SKIPPING & MODE OF ENTRY INTO MUSCLE BY ANTISENSE CONSTRUCTS OF DIFFERENT CHEMISTRIES RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITAL 700 CHILDRENS DRIVE COLUMBUS OH 43205 316056230 501(C)(3) 500000 SYSTEMIC DELIVERY OF AAVRH.74.MHCK7. MICRODYSTROPHIN FOR DMD UNIVERSITY OF PENNSYLVANIA 415 CURIE BLVD PHILADELPHIA PA 19104 231352685 501(C)(3) -11420 RETURN OR UNUSED PRIOR YEAR AWARDREFUND FROM PRIOR YEAR) 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 X 0 0 0 0 0 0 0 0 0 PATRICIA A FURLONG FOUNDING PRESIDENT & CEO 198150 0 0 0 0 0 6655 0 764 0 205569 0 0 0 KIMBERLY GALBERAITH CHIEF OPERATING OFFICER 155363 0 0 0 0 0 6553 0 19941 0 181857 0 0 0 ABBY H BRONSON SENIOR VICE PRESIDENT, RESEARCH STRA 167949 0 0 0 0 0 4785 0 10856 0 183590 0 0 0 ANNE M KENNEDY SENIOR VICE PRESIDENT, LEGISLATION & 141930 0 0 0 0 0 5752 0 9658 0 157340 0 0 0 X 7 886384 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 C, LINE 19 AVAILABLE UPON REQUEST. FORM 990, PART XII, LINE 2C: THE PROCESS HAS NOT CHANGED FROM PRIOR YEAR.