2018-07-09T16:19:43-05:00 2017-12-31 223604710 JAMES M WOOD CPA 603B OMNI DRIVE HILLSBOROUGH NJ 08844 990 2017-01-01 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 2018-07-05 JAMES M WOOD P00310420 9084311700 2018-06-15 X 2017 2022-09-23 18:48:47Z PATRICIA A FURLONG 401 HACKENSACK AVENUE NO 9TH FL HACKENSACK NJ 07601 10469147 0 X WWW.PARENTPROJECTMD.ORG X 1997 OH END DUCHENNE MUSCULAR DYSTROPHY THROUGH RESEARCH, ADVOCACY, EDUCATION, & OPTIMAL MEDICAL CARE. 11 11 25 1033 0 0 8218916 9136279 364129 466431 -874 1246 -363279 -271515 8218892 9332441 2682986 4162350 0 0 2269409 2368206 0 0 692652 2608269 2572203 7560664 9102759 658228 229682 4507799 4788793 1351412 1402724 3156387 3386069 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 6075268 4162350 466431 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. 1409516 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.THE DUCHENNE REGISTRY-PPMD'S DUCHENNE REGISTRY INITIATIVE PROVIDES A SUPPORTIVE ENVIRONMENT IN WHICH PEOPLE AFFECTED BY DUCHENNE CAN SHARE NEEDS, CONCERNS, AND COMMON EXPERIENCES. THE DUCHENNE REGISTRY WORKS COLLABORATIVELY WITH STAKEHOLDERS WHO MAKE UP THE DUCHENNE POPULATION AND PARTICIPATES ACTIVELY AND EFFECTIVELY IN THE INTERNATIONAL DUCHENNE COMMUNITY. 393406 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. 7878190 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 51 0 1 25 1 0 0 0 0 0 1 1 0 0 0 0 X 11 11 0 0 0 0 0 0 0 1 0 0 0 1 1 1 1 1 1 0 0 0 AL AR CA CO CT FL GA IL IN IA KS KY LA ME MA MI MN MS MO NE NH NJ NM NY NC OH PA SC TN TX UT VA MD WA WV WI WY X X THE ORGANIZATION 2012508440 401 HACKENSACK AVENUE NO 9TH FL HACKENSACK NJ 07601 JOHN KILLIAN BOARD CHAIRMAN 15.00 X X 0 0 0 ELLEN WAGNER BOARD TREASURER 15.00 X X 0 0 0 CHRISTINE L PIACENTINO BOARD SECRETARY 8.00 X X 0 0 0 ANESSA FEHSENFELD BOARD MEMBER 2.00 X 0 0 0 LANCE HESTER BOARD MEMBER 2.00 X 0 0 0 JONATHAN FINDER BOARD MEMBER 2.00 X 0 0 0 JOANNA JOHNSON BOARD MEMBER 2.00 X 0 0 0 LINDA CRIPE BOARD MEMBER 2.00 X 0 0 0 LAWRENCE CHARNAS BOARD MEMBER 2.00 X 0 0 0 CHRISTOPHER B CURRAN BOARD MEMBER 2.00 X 0 0 0 CHRIS JONES BOARD MEMBER 2.00 X 0 0 0 PATRICIA A FURLONG FOUNDING CEO & PRESIDENT 40.00 X 191050 0 8838 KIMBERLY GALBERAITH CHIEF OPERATING OFFICER 40.00 X 158280 0 29688 ABBY H BRONSON SENIOR VICE PRESIDENT, RESEARCH STRATEGY 40.00 X 176238 0 18896 ANNE M KENNEDY SENIOR VICE PRESIDENT, LEGISLATION & PUBLIC POLICY 40.00 X 151043 0 17454 KELLY DOUGHERTY SENIOR VICE PRESIDENT, FINANCE & ADMINISTRATION 40.00 X 148047 0 7772 KAYLAN M MOITOSO SENIOR VICE PRESIDENT, DEVELOPMENT 40.00 X 141546 0 6304 KATHLEEN J KINNETT SENIOR VICE PRESIDENT, CLINICAL CARE 40.00 X 144458 0 6221 RYAN K FISCHER SENIOR VICE PRESIDENT, COMMUNITY ENGAGEMENT 40.00 X 122325 0 11047 WILLIAM P NOLAN JR SENIOR VICE PRESIDENT, COMMUNICATIONS 40.00 X 125285 0 5412 1358272 0 111632 9 0 1 0 EGL GENETIC DIAGNOSTICS LLC DEPARTMENT 2612 PO BOX 11407 BIRMINGHAM AL 35246 GENETIC TESTING SERVICES 289450 FAEGRE BAKER DANIELS LLP 75 REMITTANCE DRIVE DEPT 6952 CHICAGO IL 606756952 RESEARCH AND EDUCATION SERVICES 152798 CONTINENTAL PLAZA ASSOCIATES JV POBOX 392185 PITTSBURGH PA 152519185 OFFICE RENTAL 102449 3 1413098 7723181 9136279 CONFERENCE FEES 900099 294431 294431 FEES FOR SERVICE 900099 172000 172000 466431 1560 1560 864877 865191 -314 -314 -314 0 1413098 271515 -271515 -271515 9332441 466431 0 -270269 4155207 4155207 7143 7143 525568 422679 40937 61952 1606425 1211504 116166 278755 81865 72170 6049 3646 154348 136058 11422 6868 57501 50263 7238 164288 50353 113935 148065 129293 11520 7252 273643 257153 4714 11776 607843 603362 4481 19756 15212 1383 3161 131372 83174 30915 17283 CONSULTING EXPENSE 371534 228624 75410 67500 OUTSIDE SERVICES 323094 301128 15485 6481 BANK CHARGES 167464 0 6667 160797 OFFICE EXPENSES & SUPPL 53530 33172 18740 1618 254113 121695 66855 65563 9102759 7878190 531917 692652 643461 1399797 2804101 2080533 742208 1025590 13393 25378 84683 147612 145305 106502 51642 38803 168311 71080 4507799 4788793 82402 69507 500000 524866 769010 808351 1351412 1402724 X 1822424 3386069 1333963 0 3156387 3386069 4507799 4788793 229682 0 X X 0 1 X 1 0 X 5904768 5992822 8725485 8583045 9602710 38808830 5904768 5992822 8725485 8583045 9602710 38808830 5102355 33706475 1984 904 377 3220 1560 8045 38816875 0.86830 0.83870 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 170000 170000 8932759 9102759 605138 151285 0 0 467950 535240 477643 605138 2085971 3128957 284296 264216 214000 170000 932512 116988 133810 119411 151285 521494 782241 6180 931 5249 101315 74482 26833 37810 31089 6721 38803 9332441 0 9332441 0 9332441 9102759 0 9102759 0 9102759 0 EUROPE 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 7143 0 0 0 0 0 0 7143 0 7143 EUROPE WORKSHOP-TREAT-NMD 7143 0 0 0 0 0 0 PPMD DREAM AUCTION 364343 364343 46084 SAM'S NIGHT 247118 247118 0 65 801637 801637 225431 1413098 1413098 271515 271515 -271515 1 RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITAL 700 CHILDRENS DRIVE COLUMBUS OH 43205 316056230 96852 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 30000 NCH/ WELLSTONE/ OSU MYOLOGY UNIVERSITY OF WASHINGTON GRANT AND CONTRACT ACCOUNTING 12455 COLLECTIONS DRIVE CHICAGO IL 60693 916001537 14163 IN SILICO RE-ENGINEERED MICRO-DYSTROPHIN: EXPANDING A NOVEL APPROACH TO EVADE T-CELL IMUNE RESPONSES IN DMD PATIENTS. IOWA STATE UNIVERSITY OF SCIENCE SPONSORED PROGRAMS ACCOUNTING 3609 ADMINISTRATIVE SERVICES AMES IA 50011 426004224 100000 QUERCETIN-BASED THERAPIES WITH IMMEDIATE APPLICATION FOR DYSTROPHIC MUSCLE UNIVERSITY OF ARIZONA 1303 E UNIVERSITY BLVD BOX 3 TUCSON AZ 85719 742652689 17010 EUREKA CERTIFICATE COURSE. UNIVERSITY OF FLORIDA PO BOX 100267 GAINESVILLE FL 32610 596002052 501(C)(3) 220000 FLORIDA COMBINED THERAPEUTICS 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 GENETIC TESTING CRITICAL PATH INSTITUTE 1730 E RIVER ROAD SUITE 200 TUCSON AZ 85718 201991334 501(C)(3) 300000 C-PATH SPONSORED RESEARCH NORTHWESTERN UNIVERSITY - ATT ASRSP 633 CLARK ROOM G-547 EVANSTON IL 60208 362167817 501(C)(3) 59800 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) 129710 WELLSTONE SUPPLEMENT UNIVERSITY OF FLORIDA 219 GRINTER HALL PO BOX 115500 GAINESVILLE FL 32611 596002052 501(C)(3) 113750 EMORY GENETICS LAB TESTING THE OHIO STATE UNIVERSITY 1960 KENNY ROAD COLUMBUS OH 43210 316025986 20037 CARDIOMYOPATHY NEW JERSEY INSTITUTE FOR TECHNOLOGY - GRANTS AND CONTRACTS ACCT UNIVERSITY HEIGHTS NEWARK NJ 07102 226000910 300000 TRANSLATION OF AN UPPER EXTREMITY EXOSKELETON TO COMMUNITY USE FOR INDIVIDUALS WITH DUCHENNE MUSCULAR DYSTROPHY 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 521654453 501(C)(3) 124152 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 1560000 SYSTEMIC DELIVERY OF AAVRH.74.MHCK7. MICRODYSTROPHIN FOR DMD REGENTS OF THE UNIVERSITY OF CALIFORNIA GEFFEN SCHOOL 695 CHARLES E YOUNG DRIVE SOUTH ROOM 5506A GONDA BLDG LOS ANGELES CA 90095 956006143 501(C)(3) 5168 COLLECTION OF CONFIRMED DMD POSITIVE & PRESUMPTIVE NEGATIVE NEWBORN SCREENING DBS SPECIMENS. CHILDREN'S HOSPITAL COLORADO 13123 EAST 16TH STREET AURORA CO 80045 840166760 501(C)(3) 25000 CERTIFIED DUCHENNE CARE CENTER RESEARCH LIASON GRANT CHILDREN'S HOSPITAL OF LOS ANGELES 4650 SUNSET BLVD MS82 LOS ANGELES CA 90027 951690977 501(C)(3) 25000 CERTIFIED DUCHENNE CARE CENTER RESEARCH LIASON GRANT CHILDREN'S MERCY KANSAS CITY 2420 CROWN CENTER KANSAS CITY MO 64108 440605373 501(C)(3) 25000 CERTIFIED DUCHENNE CARE CENTER RESEARCH LIASON GRANT DUKE UNIVERSITY PO BOX 602651 CHARLOTTE NC 28260 560532129 501(C)(3) 25000 CERTIFIED DUCHENNE CARE CENTER RESEARCH LIASON GRANT HUGO W MOSER RESEARCH INSTITUTE AT KENNEDY KRIEGER INC MUSCLE CENTER 707 N BROADWAY BALTIMORE MD 21205 521524967 501(C)(3) 25000 CERTIFIED DUCHENNE CARE CENTER RESEARCH LIASON GRANT LUCILE PACKARD FOUNDATION FOR CHILDREN'S HEALTH 400 HAMILTON AVENUE SUITE 340 PALO ALTO CA 94306 770440090 501(C)(3) 25000 CERTIFIED DUCHENNE CARE CENTER RESEARCH LIASON GRANT ANN & ROBERT H LURIE CHILDREN'S HOSPITAL OF CHICAGO- DIVISION OF NEUROLOGY 225 EAST CHICAGO AVENUE CHICAGO IL 60611 362170833 501(C)(3) 25000 CERTIFIED DUCHENNE CARE CENTER RESEARCH LIASON GRANT RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITAL 700 CHILDRENS DRIVE COLUMBUS OH 43205 316056230 25000 CERTIFIED DUCHENNE CARE CENTER RESEARCH LIASON GRANT SEATTLE CHILDREN'S HOSPITAL AND RESEARCH FOUNDATION 6901 SAND POINT WAY NE M/S S-200 SEATTLE WA 98155 911156519 501(C)(3) 25000 CERTIFIED DUCHENNE CARE CENTER RESEARCH LIASON GRANT UNIVERSITY OF CALIFORNIA LOS ANGELES PO BOX 957089 1125 MURPHY HALL 405 HILGARD AVENUE LOS ANGELES CA 90095 956006143 501(C)(3) 25000 CERTIFIED DUCHENNE CARE CENTER RESEARCH LIASON GRANT UNIVERSITY OF IOWA 118 S CLINTON STREET IOWA CITY IA 52242 426004813 25000 CERTIFIED DUCHENNE CARE CENTER RESEARCH LIASON GRANT YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 06508 060646973 501(C)(3) 25000 CERTIFIED DUCHENNE CARE CENTER RESEARCH LIASON GRANT UNIVERSITY OF CALIFORNIA DAVIS BOX 989062 WEST SACRAMENTO CA 95798 946036494 501(C)(3) 25000 CERTIFIED DUCHENNE CARE CENTER RESEARCH LIASON GRANT UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BLVD DALLAS TX 75390 756002868 210000 CORRECTION OF DMD MUTATIONS BY MYOEDITING JOHNS HOPKINS UNIVERSITY - BLOOMBERG SCHOOL OF PUBLIC HEALTH 615 N WOLFE STREET BALTIMORE MD 21205 520595110 501(C)(3) 75000 ADVANCE AND APPLY STATED-PREFERENCE METHODS TO INFORM REGULATORY DECISION MAKING ABOUT THE PATIENT AND CAREGIVER PREFERENCES IN DUCHENNE MUSCULAR DYSTROPHY GORDON RESEARCH CONFERENCES 512 LIBERTY LANE WEST KINGSTON RI 02892 260150662 501(C)(3) 10000 GORDON MYOGENESIS CONFERENCE HOPE FOR GUS 583 GREENFIELD ROAD PETERBOROUGH NH 03458 272224833 501(C)(3) 10000 SPONSORSHIP UNIVERSITY OF CALIFORNIA DAVIS REGENTS UC DAVIS BOX 989062 WEST SACRAMENTO CA 95798 946036494 501(C)(3) 6050 DMD NEWBORN SCREENING 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 CEO & PRESIDENT 191050 0 0 0 0 0 7746 0 1092 0 199888 0 0 0 KIMBERLY GALBERAITH CHIEF OPERATING OFFICER 158280 0 0 0 0 0 6703 0 22985 0 187968 0 0 0 ABBY H BRONSON SENIOR VICE PRESIDENT, RESEARCH STRA 176238 0 0 0 0 0 5400 0 13496 0 195134 0 0 0 ANNE M KENNEDY SENIOR VICE PRESIDENT, LEGISLATION & 151043 0 0 0 0 0 6380 0 11074 0 168497 0 0 0 KELLY DOUGHERTY SENIOR VICE PRESIDENT, FINANCE & ADM 148047 0 0 0 0 0 5962 0 1810 0 155819 0 0 0 KATHLEEN J KINNETT SENIOR VICE PRESIDENT, CLINICAL CARE 144458 0 0 0 0 0 5779 0 442 0 150679 0 0 0 X 31 1066536 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.