2013-04-10T15:52:09-05:00 2012-12-31 310800053 CLARK SCHAEFER HACKETT & CO 10100 INNOVATION DRIVE SUITE 400 DAYTON OH 45342 990 2012-01-01 311405490 THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC PARE 2019449985 401 HACKENSACK AVENUE 9TH FLOOR HACKENSACK NJ 07601 NANCY L GROSS 5134246035 2013-04-10 1 ROBIN M DENNIS P00999809 9372260070 2013-04-10 2012 2016-02-25 16:41:14Z PATRICIA A FURLONG 401 HACKENSACK AVENUE 9TH FLOOR HACKENSACK NJ 07601 7518044 0 X WWW.PARENTPROJECTMD.ORG X 1997 OH PARENT PROJECT MUSCULAR DYSTROPHY'S MISSION IS TO IMPROVE THE TREATMENT, QUALITY OF LIFE AND LONG-TERM OUTLOOK FOR ALL INDIVIDUALS AFFECTED BY DUCHENNE MUSCULAR DYSTROPHY (DUCHENNE) THROUGH RESEARCH, ADVOCACY, EDUCATION AND COMPASSION. OBJECTIVES- TO IDENTIFY, SUPPORT, AND SHARE PROMISING DUCHENNE-RELATED RESEARCH.- TO MAKE STATE-OF-THE-ART INFORMATION ABOUT TREATMENT AND CARE OPTIONS AVAILABLE TO ALL MEMBERS OF THE DUCHENNE COMMUNITY.- TO PURSUE STRATEGIES THAT WILL IMPACT THIS GENERATION OF YOUNG MEN AFFECTED BY DUCHENNE AS WELL AS FUTURE GENERATIONS.- TO ENCOURAGE POLICYMAKERS TO AFFORD THE SAME PRIORITY TO DUCHENNE AS THEY WOULD TO OTHER DISORDERS OF SIMILIAR INCIDENCE AND PREVALENCE.- TO CREATE A SUPPORTIVE COMMUNITY FOR PEOPLE AFFECTED BY DUCHENNE. 16 16 16 515 0 0 6588002 6099492 77571 52208 -490 -6081 -333208 -365921 6331875 5779698 2664243 2779190 0 0 1316491 1131278 0 0 672392 2238325 2311660 6219059 6222128 112816 -442430 3191220 2885159 342883 479253 2848337 2405906 THE PARENT PROJECT FOR MUSCULAR DYSTROPHY'S MISSION IS TO END DUCHENNE. WE ACCELERATE RESEARCH, RAISE OUR VOICES IN WASHINGTON, DEMAND OPTIMAL CARE FOR ALL YOUNG MEN, AND EDUCATE THE GLOBAL COMMUNITY. 0 0 4071085 2779190 SUPPORT FOR RESEARCH TO ACCELERATE TREATMENTS AND A CURE FOR DUCHENNE MUSCULAR DYSTROPHY INCLUDING STUDIES IN THE FOLLOWING AREAS: RECOMBINANT BIGLYCAN, COMBINED THERAPEUTICS, CEDARS-SINAI CLINICAL TRIALS, FAILED REGENERATION IN DMD, FOLLISTATIN GENE THERAPY, CHRONIC SORROW THERAPEUTICS, CARDIAC USE OF SILDENAFIL, TAMOXIFEN, AND UTROPHIN PROMOTER HTS. 819373 52208 EDUCATIONAL INITIATIVES INCLUDING ONLINE RESOURCES AND TWO CONFERENCES HELD IN SAN DIEGO AND FORT LAUDERDALE THAT BROUGHT SCIENTISTS AND FAMILIES IN THE DUCHENNE COMMUNITY TOGETHER TO DISCUSS AND EXPEDITE TREATMENTS, PATIENT CARE, AND RESEARCH FOR A CURE FOR THE DISEASE. OTHER EDUCATIONAL EFFORTS WERE PROMOTED THROUGH F.A.C.E.S. PROGRAM, ALONG WITH AN INITIATIVE TO ORGANIZE THE WORLDWIDE COMMUNITY IN A PROGRAM CALLED DUCHENNE CONNECT. 166213 ADVOCACY IS PROMOTED ON AN ANNUAL BASIS THROUGH A LEGISLATIVE CONFERENCE HELD IN WASHINGTON, D.C. UNDER THE LEADERSHIP OF A CONSULTING FIRM BASED IN THE AREA. PARENTS TAKE A HANDS-ON ROLE IN COMMUNICATING WITH LEGISLATORS DURING THIS PROCESS, FOR THE PURPOSE OF PROMOTING AWARENESS AND ENCOURAGING GOVERNMENT FUNDING FOR RESEARCH AND PATIENT CARE. IN ADDITION, COMMUNICATIONS ARE ROUTINELY HELD WITH NIH, THE FDA, AND THE CDC. 5056671 1 1 0 1 0 0 0 0 0 0 1 0 0 1 0 1 1 0 0 0 1 1 0 0 1 0 0 1 1 1 0 0 0 0 0 1 0 0 1 0 0 0 0 0 0 0 0 1 56 0 1 16 1 0 0 0 0 0 1 1 0 0 0 0 X 16 16 0 1 0 0 0 0 0 1 0 0 0 1 1 1 1 1 1 1 1 0 AZ AR CA CO CT FL GA IL IN KY LA MD MA MI MN MS MO NJ OH PA SC TN TX UT VA WA WI WY NH NY NC X X NANCY L GROSS CPA 5134246035 1208 SUNSET STREET MIDDLETOWN OH 45042 DOUGLAS BIGGAR 3.00 X 0 0 0 NEIL BRANDOM 3.00 X 0 0 0 JOHN HIATT 3.00 X 0 0 0 JOHN KILLIAN 10.00 X X 0 0 0 DANIEL GAROFALO 5.00 X X 0 0 0 MARTY KARLIN 3.00 X 0 0 0 HEINRICH MEERMANN 0.50 X 0 0 0 ROBERT MCDONALD MD 10.00 X X 0 0 0 JAMES POYSKY 3.00 X 0 0 0 JASBHIR SEEHRA 3.00 X 0 0 0 CATHERINE COLLINS 10.00 X 0 0 0 ANESSA FEHSENFELD 10.00 X 0 0 0 ROBERT GETLER 5.00 X 0 0 0 LANCE HESTER 3.00 X 0 0 0 ROBERT NUTT 3.00 X 0 0 0 ELLEN WAGNER 3.00 X 0 0 0 PATRICIA FURLONG 65.00 X 168000 0 14466 KIMBERLY GALBERAITH 50.00 X 152200 0 19674 NANCY GROSS 32.00 X 106414 0 0 426614 0 34140 3 0 1 0 MARRIOTT BUSINESS SERVICES PO BOX 402745 ATLANTA GA 30384 TRAVEL SERVICES 240825 FAEGREBD CONSULTING PO BOX 664091 INDIANAPOLIS IN 46266 CONSULTING 198342 KATHY KINNETT 1570 HOLLYWOOD AVENUE CINCINNATI OH 45224 CONSULTING 133120 LEE SWEENEY CONSULTING LLC 2100 LOCUST STREET PHILADELPHIA PA 19103 CONSULTING 132000 GROSS & COMPANY INC CPA'S 1208 SUNSET STREET MIDDLETOWN OH 45042 CFO SERVICES 106414 5 21070 1588661 55593 4434168 1499845 6099492 CONFERENCE FEES 900099 52208 52208 52208 2310 2310 1364034 1372332 93 -8298 -93 -8391 -8391 0 1588661 365921 -365921 -365921 5779698 52208 0 -372002 2527046 2527046 101733 101733 150411 150411 460754 307482 153272 561685 457146 104539 18310 18310 90529 74280 6244 10005 3910 3910 115873 6002 92371 17500 359937 319697 4000 36240 48896 16077 20840 11979 25100 3506 21594 126662 104821 8393 13448 299139 227279 22085 49775 389068 389068 2780 2780 25345 9611 7867 7867 77425 1557 75868 OUTSIDE SERVICES 239452 190975 48477 BANK CHARGES 153482 17214 136268 FEES & PERMITS 119716 9126 110590 MEALS & ENTERTAINMENT 82874 22363 9343 51168 242001 138491 28974 74536 6222128 5056671 493065 672392 364489 312217 1731171 1612152 186316 398061 50784 34523 176897 105615 91740 60206 31154 31534 650409 391057 3191220 2885159 173677 146856 169206 332397 342883 479253 X 2848337 1168421 1237485 2848337 2405906 3191220 2885159 X -442430 -1 X X 0 1 X 1 0 X 4512487 4538702 7093016 6588002 6099492 28831699 4512487 4538702 7093016 6588002 6099492 28831699 5211411 23620288 3136 156 3773 9589 2310 18964 28850663 311768 0.81870 0.85220 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 166266 166266 6055862 6222128 461106 115277 0 0 326849 379296 461002 461106 1628253 2442380 189679 190870 193286 166266 740101 81712 94824 115251 115277 407064 610596 4480 254 4226 87260 59952 27308 31534 DEPOSITS 3966 PREPAID GRANT EXPENSE 386348 EMPLOYEE ADVANCES 743 391057 X 5780769 0 5780769 -1071 -1071 5779698 6223199 1071 1071 6222128 0 6222128 DESCRIPTION OF UNCERTAIN TAX POSITIONS UNDER FIN 48: PART X, LINE 2: THE ORGANIZATION IS EXEMPT FROM FEDERAL INCOME TAX UNDER THE PROVISIONS OF INTERNAL REVENUE CODE SECTION 501(C)(3). THE ORGANIZATION DOES NOT CURRENTLY CONDUCT ANY ACTIVITIES, WHICH WOULD RESULT IN THE IMPOSITION OF THE UNRELATED BUSINESS INCOME TAX AND BELIEVES IT HAS NOT EARNED ANY UNRELATED BUSINESS INCOME AND HAS ESTIMATED NO TAX IS DUE BASED ON CURRENT FACTS AND CIRCUMSTANCES. THUS, THE ORGANIZATION HAS DETERMINED THAT AN ACCRUAL FOR TAXES IS NOT NEEDED FOR THE YEAR ENDED DECEMBER 31, 2012. PART XI, LINE 4B - OTHER ADJUSTMENTS: LOSS ON DISPOSITION OF FIXED ASSETS = (93) IN-KIND DONATIONS OF PROFESSIONAL FEES = (978) PART XII, LINE 2D - OTHER ADJUSTMENTS: LOSS ON DISPOSITION OF FIXED ASSETS = 93 IN-KIND DONATIONS OF PROFESSIONAL FEES = 978 1 EUROPE 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 129849 NORTH AMERICA 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 16667 EAST ASIA / PACIFIC 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 54700 0 0 0 0 0 0 201216 0 201216 EUROPE DEVELOPMENT OF MEMRI 16607 WIRE TRANSFER FMV - US DOLLARS EUROPE TACT MEETING SUPPORT 48542 WIRE TRANSFER FMV - US DOLLARS EUROPE ERICE ISBMR 11TH COURSE 10000 WIRE TRANSFER FMV - US DOLLARS NORTH AMERICA EXONS 45-55 SKIPPING 16667 WIRE TRANSFER FMV - US DOLLARS EUROPE TAMOXIFEN PROJECT 54700 WIRE TRANSFER FMV - US DOLLARS EAST ASIA / PACIFIC WMS INTERNATIONAL CONGRESS 6367 WIRE TRANSFER FMV - US DOLLARS 1 4 1 0 0 0 0 0 PROCEDURE FOR MONITORING GRANTS OUTSIDE THE U.S.: SCHEDULE F, PART I, LINE 2: A REPORT OF EXPENDITURES AND MEDICAL RESULTS OF THE GRANT ACTIVITY IS REQUIRED FROM THE GRANTEE. METHOD USED TO ACCCOUNT FOR EXPENDITURES: SCHEDULE F, PART I, LINE 3: ACCRUAL METHOD SCHEUDLE F, PART II, LINE 1: ACCRUAL METHOD END DUCHENNE GALA 481728 481728 170497 SAM'S DAY 112835 112835 734 32 955588 955588 108439 1550151 1550151 279670 279670 -279670 1 CEDARS-SINAI MEDICAL CENTER 8700 BEVERLY BOULEVARD LOS ANGELES CA 90048 951644600 501(C)(3) 376813 N/A CEDARS-SINAI CLINICAL TRIALS CHILDREN'S RESEARCH INSTITUTE 111 MICHIGAN AVENUE WASHINGTON DC 20010 521654453 501(C)(3) 57759 N/A WEISMAN FELLOWSHIP CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER 3333 BURNET AVENUE CINCINNATI OH 45229 310833936 501(C)(3) 29670 N/A AAA CARDIOMYOPATHY TREATMENT, BIOLOGICAL SAMPLES HALO THERAPEUTICS LLC 275 GROVE STREET NEWTON MA 02466 275336394 54167 N/A PHASE II STUDY HT-100 LEE SWEENEY CONSULTING LLC 2100 LOCUST STREET PHILADELPHIA PA 19103 262195280 132000 N/A PROJECT CATALYST MARK KREUGER & ASSOCIATES INC 521 FIFTH AVENUE 27TH FLOOR NEW YORK NY 10175 133866890 27618 N/A FDA COMMISSIONED PAPER OHIO STATE UNIVERSITY 1960 KENNY ROAD COLUMBUS OH 43210 316025986 501(C)(3) 8333 N/A RENIN INHIBITORS POSITIVE EXPOSURE 43 EAST 20TH STREET NEW YORK NY 10003 020536768 501(C)(3) 25000 N/A PEARLS PROJECT RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITAL 700 CHILDRENS DRIVE COLUMBUS OH 43205 316056230 501(C)(3) 287372 N/A NCH/WELLSTONE/OSU MYOLOGY, CARDIAC INITIATIVE, FOLLASTINE GENE THERAPY SOMALOGIC INC 2945 WILDERNESS PLACE BOULDER CO 80301 522195896 6750 N/A SOMALOGIC DATA ANALYSIS TIVORSAN PHARMACEUTICALS INC 3 DAVOL SQUARE PROVIDENCE RI 02903 770702642 490000 N/A RECOMBINANT BIGLYCAN UNIVERSITY OF WASHINGTON 1705 NE PACIFIC STREET H-418 HSB BOX 357290 SEATTLE WA 09195 916001537 501(C)(3) 68174 N/A CARDIAC USE OF SILDENAFIL UNIVERSITY OF PENNSYLVANIA 3900 DELANCEY STREET PHILADELPHIA PA 19104 231352685 501(C)(3) 794375 N/A SLEEPER DOG COLONY, UTROPHIN PROMOTER HTS, NEW DIRECTIONS CONFERENCE, COMBINED THERAPEUTICS, FAILED REGENERATION IN MD UNIVERSITY OF CALIFORNIA 405 HILGARD AVE 1125 MURPHY HALL LOS ANGELES CA 90095 956006143 501(C)(3) 52500 N/A RNA-SEQ ANALYSIS - FIBROSIS UNIVERSITY OF CALIFORNIA DAVIS PO BOX 989062 WEST SACRAMENTO CA 95798 946036494 501(C)(3) 23952 N/A OUTCOMES FOR TRIALS UNIVERSITY OF FLORIDA 123 GRINTER HALL GAINESVILLE FL 32611 596002052 501(C)(3) 20086 N/A MAGNETIC RESONANCE IMAGING UNIVERSITY OF MISSOURI PO BOX 807012 KANSAS CITY MO 64180 436003859 501(C)(3) 47127 N/A SERCA2 GENE THERAPY UNIVERSITY OF IOWA B5 JESSUP HALL IOWA CITY IA 52242 426004813 501(C)(3) 22225 N/A AUTISM EXPLORATORY AWARD 13 5 CHRONIC SORROW THERAPEUTICS 1 101733 FMV PROCEDURE FOR MONITORING GRANTS IN THE U.S.: PART I, LINE 2: SCHEDULE I, 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 X 0 0 0 0 0 0 0 0 0 PATRICIA FURLONG 168000 0 0 0 0 0 5040 0 9426 0 182466 0 0 0 KIMBERLY GALBERAITH 152200 0 0 0 0 0 4566 0 15108 0 171874 0 0 0 GROSS & COMPANY INC CPA'S AND BUSINESS ADVISORS CFO, NANCY GROSS, OWNS COMPANY 106414 THE ORGANIZATION HAS HIRED NANCY GROSS TO ACT AS CFO. 0 X 7 1372332 FMV AT DATE OF GIFT X FOOD/ENTERTAINMENT DONATED FOR RAFFLES 304 127513 FMV 0 1 1 THIRD PARTY USE: 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 3 THE ORGANIZATION HAS HIRED AN INDEPENDENT CONTRACTOR TO ACT AS THEIR CFO. FORM 990, PART VI, SECTION A, LINE 8B THE ORGANIZATION DID NOT DOCUMENT ALL OF ITS COMMITTEE MEETINGS FORM 990, PART VI, SECTION B, LINE 11 THE 990 IS COMPLETED BY AN INDEPENDENT CPA FIRM AND A DRAFT IS PRESENTED TO THE BOARD MEMBERS FOR REVIEW. THE BOARD WILL THEN VOTE 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 AN INDEPENDENT COMPANY WAS RETAINED TO CONDUCT AN EXECUTIVE COMPENSATION REASONABLENESS AUDIT, AS OUTLINED BY SECTION 4958 OF THE INTERNAL REVENUE CODE AND TREASURY REGULATION SECTION 53.4958-6, FOR THE EXECUTIVE DIRECTOR AND EXECUTIVE VICE PRESIDENT. THEY DETERMINED THAT THE COMPENSATION LEVELS IN THE 2011 AND 2012 BUDGET COMPLIED WITH INDUSTRY STANDARDS. KIMBERLY GALBERAITH, EXECUTIVE VICE PRESIDENT, WAS INCLUDED IN THEIR EXECUTIVE COMPENSATION AUDIT. THE CONSIDERATION AND APPROVAL OF THE BUDGET WAS SUBJECT TO THE RESULTS OF THE AUDIT. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION PREPARES AN ANNUAL REPORT WHICH INCLUDES THIS INFORMATION. THE REPORT IS MADE AVAILABLE TO THE PUBLIC UPON REQUEST. CHANGES IN NET ASSETS OR FUND BALANCES: FORM 990, PART XI, LINE 9: ROUNDING -1. FORM 990, PART XI, LINE 2C THE PROCESS HAS NOT CHANGED FROM PRIOR YEAR.