2014-05-09T15:03:27-05:00 2013-12-31 310800053 CLARK SCHAEFER HACKETT & CO 10100 INNOVATION DR SUITE 400 DAYTON OH 45342 990 2013-01-01 311405490 THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC PARE 5134240696 401 HACKENSACK AVENUE NO 9TH FL HACKENSACK NJ 07601 NANCY L GROSS CFO 5134246035 2014-04-30 1 ROBIN M DENNIS P00999809 9372260070 2014-04-30 2013 2015-11-30 17:44:51Z PATRICIA A FURLONG 401 HACKENSACK AVENUE 9TH FLOOR HACKENSACK NJ 07601 6281506 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. 15 15 18 538 0 0 6099492 5904768 52208 65455 -6081 2836 -365921 -343210 5779698 5629849 2779190 2227380 0 0 1131278 1347166 0 0 724570 2311660 2511769 6222128 6086315 -442430 -456466 2885159 2962539 479253 1013099 2405906 1949440 X THE PARENT PROJECT FOR MUSCULAR DYSTROPHY'S MISSION IS TO END DUCHENNE MUSCULAR DSTROPHY. WE ACCELERATE RESEARCH, RAISE OUR VOICES IN WASHINGTON, DEMAND OPTIMAL CARE FOR ALL YOUNG MEN, AND EDUCATE THE GLOBAL COMMUNITY. 1 0 3295024 2095084 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, COMBINED THERAPEUTICS, EXONS 45-55 SKIPPING, OUTCOMES FOR TRIALS, A CLINICAL DEVELOPMENT SUPERHIGHWAY, AAA CARDIOMYOPATHY TREATMENT, TAMOXIFEN, AND IPS CELLS AND THERAPEUTIC APPLICATIONS, TO NAME A FEW. 1223106 132296 65455 EDUCATIONAL INITIATIVES INCLUDING ONLINE RESOURCES AND TWO CONFERENCES HELD IN SAN DIEGO AND BALTIMORE 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 A NEW INITIATIVE CALLED TRANSFORMING DUCHENNE CARE, F.A.C.E.S., A NEW INITIATIVE CALLED DECODE DUCHENNE, AND AN INITIATIVE TO ORGANIZE THE WORLDWIDE COMMUNITY IN A PROGRAM CALLED DUCHNNE CONNECT. 320912 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. DURING 2013, A WHITE PAPER WAS DRAFTED TO EXPLAIN THE MISSION AND A SUGGESTED APPROACH TO PROMOTE THE TREATMENT AND CURE FOR DUCHNNE MUSCULAR DYSTROPHY 4839042 1 1 0 1 0 0 0 0 0 0 1 0 0 0 0 1 1 0 0 0 1 1 0 0 1 0 0 1 0 1 0 0 0 0 0 1 0 0 1 0 0 0 0 0 0 0 0 1 66 0 1 18 1 0 0 0 0 0 1 1 0 0 0 0 X 15 15 0 1 1 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 IA ME NE NM NY NC NH X X NANCY L GROSS CPA 5134246035 1208 SUNSET STREET MIDDLETOWN OH 45042 NEIL BRANDOM BOARD MEMBER 3.00 X 0 0 0 CATHERINE J COLLINS BOARD MEMBER 3.00 X 0 0 0 ELLEN WAGNER BOARD MEMBER 3.00 X 0 0 0 ANESSA FEHSENFELD BOARD MEMBER 10.00 X 0 0 0 DANIEL P GAROFALO BOARD SECRETARY 10.00 X X 0 0 0 ROBERT GETLER BOARD MEMBER 10.00 X 0 0 0 LANCE HESTER BOARD MEMBER 3.00 X 0 0 0 JOHN HIATT BOARD MEMBER 3.00 X 0 0 0 MARTIN KARLIN TRUSTEE 3.00 X 0 0 0 JOHN KILLIAN BOARD TREASURER 3.00 X X 0 0 0 ROBERT MCDONALD MD BOARD CHAIRMAN 10.00 X X 0 0 0 HEINRICH MEERMANN TRUSTEE 3.00 X 0 0 0 ROBERT NUTT TRUSTEE 3.00 X 0 0 0 JAMES POYSKY TRUSTEE 3.00 X 0 0 0 JASBIR SEEHRA TRUSTEE 3.00 X 0 0 0 DOUGLAS BIGGAR TRUSTEE 3.00 X 0 0 0 PATRICIA FURLONG FOUNDING PRESIDENT/CEO 65.00 X 171081 0 12758 KIMBERLY GALBERAITH COO 50.00 X 147132 0 19062 NANCY GROSS CFO 32.00 X 83820 0 0 SHARON HESTERLEE VP OF RESEARCH 40.00 X 153565 0 7139 HOLLY PEAY VP OF OUTREACH AND EDUCATION 40.00 X 109340 0 3280 664938 0 42239 4 0 1 0 UNIVERSITY OF PENNSLYVANIA 415 CURIE BOULEVARD PHILADELPHIA PA 19104 RESEARCH 527281 FAEGREBD CONSULTING PO BOX 664091 INDIANAPOLIS IN 46266 CONSULTING 306697 MARRIOTT BUSINESS SERVICES PO BOX 402745 ATLANTA GA 30384 TRAVEL 235394 MARK KRUEGER & ASSOCIATES INC 521 FIFTH AVE 27TH FLOOR NEW YORK NY 10175 CONSULTING 141325 KATHI KINNETT 401 HACKENSACK AVE 9TH FLOOR HACKENSACK NJ 07601 CONSULTING 136357 9 1613329 146051 4145388 450002 5904768 CONFERENCE FEES 900099 65455 65455 65455 1984 1984 309299 307858 589 1441 -589 852 852 0 1613329 343210 -343210 -343210 5629849 65455 0 -340374 2016261 2016261 4839 4839 206280 206280 433853 303072 130781 790130 647098 143032 22855 22855 100328 75966 13172 11190 6660 3605 3055 113425 1232 93953 18240 421371 387323 10000 24048 61695 15204 33967 12524 26188 6929 19259 122458 97892 10167 14399 371599 284945 40269 46385 387750 387750 477 477 15716 5444 5136 5136 82659 6300 76359 OUTSIDE SERVICES 318438 278406 6115 33917 FEES & PERMITS 182015 16471 3866 161678 BANK CHARGES 165710 11762 153948 MEALS & ENTERTAINMENT 78739 41525 9318 27896 156869 52500 32192 72177 6086315 4839042 522703 724570 312217 80144 1612152 1955080 398061 282817 34523 30333 105615 458316 93140 69404 31534 23736 391057 132113 2885159 2962539 146856 158671 332397 854428 479253 1013099 X 1168421 1517808 1237485 431632 2405906 1949440 2885159 2962539 -456466 0 X X 0 1 X 1 0 X 4538702 7093016 6588002 6099492 5904768 30223980 4538702 7093016 6588002 6099492 5904768 30223980 6028752 24195228 156 3773 9589 2310 1984 17812 30241792 317014 0.80010 0.81870 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 320912 320912 5766348 6087260 454363 113591 0 0 379296 461002 461106 454363 1755767 2633651 190870 193286 166266 320912 871334 94824 115251 115277 113591 438943 658415 4480 369 4111 58338 44052 14286 30322 24983 5339 23736 X 5631383 0 5631383 -1534 -1534 5629849 6087849 1534 1534 6086315 0 6086315 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, 2013. PART XI, LINE 4B - OTHER ADJUSTMENTS: LOSS ON DISPOSITION OF FIXED ASSETS = (589) IN-KIND DONATIONS OF PROFESSIONAL FEES = (945) PART XII, LINE 2D - OTHER ADJUSTMENTS: LOSS ON DISPOSITION OF FIXED ASSETS = 589 IN-KIND DONATIONS OF PROFESSIONAL FEES = 945 1 EUROPE 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 172947 NORTH AMERICA 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 33333 0 0 0 0 0 0 206280 0 206280 EUROPE DEVELOPMENT OF MEMRI 32397 WIRE TRANSFER FMV - US DOLLARS EUROPE TACT MEETING SUPPORT 27000 WIRE TRANSFER FMV - US DOLLARS NORTH AMERICA EXONS 45-55 SKIPPING 33333 WIRE TRANSFER FMV - US DOLLARS EUROPE TAMOXIFEN PROJECT 82050 WIRE TRANSFER FMV - US DOLLARS EUROPE DMD LIASON POST 31500 WIRE TRANSFER FMV - US DOLLARS 5 1 0 0 0 0 0 PART I, LINE 2: A REPORT OF EXPENDITURES AND MEDICAL RESULTS OF THE GRANT ACTIVITY IS REQUIRED FROM THE GRANTEE. PART I, LINE 3: ACCRUAL METHOD DREAM AUCTION 342007 342007 92163 COACH TO CURE MD 248883 248883 20589 63 1022439 1022439 230458 1613329 1613329 343210 343210 -343210 1 CEDARS-SINAI MEDICAL CENTER 8700 BEVERLY BOULEVARD LOS ANGELES CA 90048 951644600 501(C)(3) 94203 N/A CEDARS-SINAI CLINICAL TRIALS CHILDREN'S RESEARCH INSTITUTE 111 MICHIGAN AVENUE WASHINGTON DC 20010 521654453 501(C)(3) 47770 N/A WEISMAN FELLOWSHIP CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER 3333 BURNET AVENUE CINCINNATI OH 45229 310833936 501(C)(3) 46344 N/A AAA CARDIOMYOPATHY TREATMENT, BIOLOGICAL SAMPLES 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 127457 N/A FDA COMMISSIONED PAPER RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITAL 700 CHILDRENS DRIVE COLUMBUS OH 43205 316056230 501(C)(3) 96054 N/A NCH/WELLSTONE/OSU MYOLOGY, CARDIAC INITIATIVE, FOLLASTINE GENE THERAPY TIVORSAN PHARMACEUTICALS INC 3 DAVOL SQUARE PROVIDENCE RI 02903 770702642 75000 N/A RECOMBINANT BIGLYCAN UNIVERSITY OF WASHINGTON 1705 NE PACIFIC STREET H-418 HSB BOX 357290 SEATTLE WA 09195 916001537 501(C)(3) 55528 N/A CARDIAC USE OF SILDENAFIL UNIVERSITY OF PENNSYLVANIA 3900 DELANCEY STREET PHILADELPHIA PA 19104 231352685 501(C)(3) 599437 N/A SLEEPER DOG COLONY, UTROPHIN PROMOTER HTS, NEW DIRECTION CONFERENCE, COMBINED THERAPEUTICS, FAILED REGENERATION IN MD UNIVERSITY OF CALIFORNIA 405 HILGARD AVE 1125 MURPHY HALL LOS ANGELES CA 90095 956006143 501(C)(3) 144193 N/A RNA-SEQ ANALYSIS - FIBROSIS UNIVERSITY OF CALIFORNIA DAVIS PO BOX 989062 WEST SACRAMENTO CA 95798 946036494 501(C)(3) 119579 N/A OUTCOMES FOR TRIALS UNIVERSITY OF FLORIDA 123 GRINTER HALL GAINESVILLE FL 32611 596002052 501(C)(3) 48037 N/A MAGNETIC RESONANCE IMAGING UNIVERSITY OF MISSOURI PO BOX 807012 KANSAS CITY MO 64180 436003859 501(C)(3) 140213 N/A SERCA2 GENE THERAPY DART THERAPEUTICS INC ONE BROADWAY CAMBRIDGE MA 02142 462264157 75000 N/A CLINICAL DEVELOPMENT HUGO W MOSER RESEARCH INSTITUTE 707 N BROADWAY BALTIMORE MD 21205 521524967 501(C)(3) 17500 N/A ENHANCING TRANSPLANT ENVIRONMENT UNIVERSITY OF ARIZONA 1303 E UNIVERSITY BLVD TUCSON AZ 85719 742652689 501(C)(3) 23305 N/A EUREKA CERTIFICATE COURSE UNIVERSITY OF ROCHESTER 601 ELMWOOD AVE ROCHESTER NY 14642 160743209 501(C)(3) 26119 N/A CORTICOSTERIODS IN DMD REVERAGEN BIOPHARMA INC 9700 GREAT SENECA HIGHWAY ROCKVILLE MD 20850 263808415 8332 N/A MICRO RNAS UNIVERSITY OF NEVEDA RENO 1664 N VIRGINIA AVE RENO NV 89557 886000024 501(C)(3) 12500 N/A LAMININ-III PROTEIN THERAPY UNIVERSITY OF MINNESOTA NW 5957 PO BOX 1450 MINNEAPOLIS MN 55485 416007513 501(C)(3) 88000 N/A IPS CELLS AND THERAPEUTIC APPS HALO THERAPEUTICS LLC 275 GROVE STREET NEWTON MA 02466 275336394 45833 N/A PHASE II STUDY HT-100 UNIVERSITY OF IOWA B5 JESSUP HALL IOWA CITY IA 52242 426004813 501(C)(3) -7243 N/A NATIONAL TASK FORCE 15 7 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 FURLONG FOUNDING PRESIDENT/CEO 168000 0 3081 0 0 0 5137 0 7621 0 183839 0 0 0 KIMBERLY GALBERAITH COO 144200 0 2932 0 0 0 4423 0 14639 0 166194 0 0 0 SHARON HESTERLEE VP OF RESEARCH 150000 0 3565 0 0 0 4614 0 2525 0 160704 0 0 0 GROSS & COMPANY INC CPA'S AND BUSINESS ADVISORS CFO, NANCY GROSS, OWNS COMPANY 83820 NANCY L. GROSS, CPA OWNS GROSS AND COMPANY, LICENSED BUSINESS PROFESSIONALS. HER COMPANY BILLS THE ORGANIZATION FOR TIME SHE SPENDS IN HER CAPACITY AS ACTING CHIEF FINANCIAL OFFICER. 0 X 5 307857 FMV AT DATE OF GIFT X FUNDRAISING S 623 142145 FMV 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 III, LINE 2 DURING THE YEAR, THE ORGANIZATION BEGAN AN INITIATIVE CALLED TRANSFORMING DUCHENNE CARE TO PROMOTE AND ESTABLISH CONSISTENT CARE STANDARDS. IN ADDITION, WE ESTABLISHED A SUPERHIGHWAY PROJECT TO EXPEDITE THE DEVELOPMENT, TESTING, AND AVAILABILITY OF DRUGS FOR THE TREATMENT OF THE DISEASE. FINALLY, WE BEGAN A PROJECT CALLED DECODE DUCHENNE THAT PURSUES THE DEVELOPMENT OF A DATABASE OF CLINICAL CHARACTERISTICS OF DUCHENNE VICTIMS. 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 4 THE BOARD UPDATED THE BY-LAWS DURING 2014. 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 CHIEF OPERATING OFFICER. THEY DETERMINED THAT THE COMPENSATION LEVELS COMPLIED WITH INDUSTRY STANDARDS. 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. FORM 990, PART XI, LINE 2C THE PROCESS HAS NOT CHANGED FROM PRIOR YEAR.