2015-04-22T07:35:38-05:00 2014-12-31 310800053 CLARK SCHAEFER HACKETT & CO 10100 INNOVATION DR SUITE 400 DAYTON OH 45342 990 2014-01-01 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 2015-04-20 1 ROBIN M DENNIS P00999809 9372260070 2015-04-08 2014 2016-03-07 17:11:31Z PATRICIA A FURLONG 401 HACKENSACK AVENUE 9TH FLOOR HACKENSACK NJ 07601 6321998 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. 11 11 21 0 0 0 5904768 5992822 65455 99920 2836 36967 -343210 -192695 5629849 5937014 2227380 2062225 0 0 1347166 1607461 0 0 1006211 2511769 2689322 6086315 6359008 -456466 -421994 2962539 1881140 1013099 353694 1949440 1527446 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. 0 0 3564242 1968129 99920 SUPPORT FOR RESEARCH TO ACCELERATE TREATMENTS AND A CURE FOR DUCHENNE MUSCULAR DYSTROPHY INCLUDING STUDIES IN THE FOLLOWING AREAS: FDA DRAFT POLICY GUIDANCE, COMBINED THERAPEUTICS, SERCA2 GENE THERAPY, AON-INDUCED EXON SKIPPING IPS CELLS AND THERAPEUTIC APPLICATIONS, AND FAILED REGENERATION IN MD, TO NAME A FEW. 1160852 94096 EDUCATIONAL INITIATIVES INCLUDING ONLINE RESOURCES AN ANNUAL CONFERENCE HELD IN CHICAGO 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., DECODE DUCHENNE, AND DUCHNNE CONNECT. 284296 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. 5009390 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 0 1 0 0 0 0 0 1 0 0 1 0 0 0 0 0 0 0 0 1 78 0 1 21 1 0 0 0 0 0 0 0 0 0 0 X 11 11 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 IA ME NE NY NH X X NANCY L GROSS CPA 5134246035 1208 SUNSET STREET MIDDLETOWN OH 45042 CATHERINE J COLLINS BOARD MEMBER 3.00 X 0 0 0 ELLEN WAGNER BOARD MEMBER 3.00 X 0 0 0 ANESSA FEHSENFELD BOARD CHAIRMAN 10.00 X 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 TREASURER 3.00 X X 0 0 0 MARTIN KARLIN BOARD MEMBER 3.00 X 0 0 0 ROBERT MCDONALD MD BOARD MEMBER 10.00 X 0 0 0 HEINRICH MEERMANN BOARD MEMBER 3.00 X 0 0 0 JAMES POYSKY BOARD MEMBER 3.00 X 0 0 0 DOUGLAS BIGGAR BOARD MEMBER 3.00 X 0 0 0 PATRICIA FURLONG FOUNDING PRESIDENT/CEO 65.00 X 168000 0 5440 KIMBERLY GALBERAITH COO 50.00 X 144200 0 19325 NANCY GROSS CFO 32.00 X 88456 0 0 SHARON HESTERLEE VP OF RESEARCH 40.00 X 150000 0 16729 HOLLY PEAY VP OF OUTREACH AND EDUCATI 40.00 X 115985 0 3480 KATHI KINNETT SR VP OF CLINICAL CARE 40.00 X 109800 0 3294 776441 0 48268 5 0 1 0 UNIVERSITY OF PENNSLYVANIA 415 CURIE BOULEVARD PHILADELPHIA PA 19104 RESEARCH 506432 UNIVERSITY OF FLORIDA FOUNDATION PO BOX 100267 GAINESVILLE FL 32610 RESEARCH 291353 FAEGREBD CONSULTING 75 REMITTANCE D DEPT 6952 CHICAGO IL 60675 CONSULTING 258898 MARK KRUEGER & ASSOCIATES INC 521 FIFTH AVE 27TH FLOOR NEW YORK NY 10175 CONSULTING 211560 CURRATORS OF THE UNIV OF MISSOURI PO BOX 807012 KANSAS CITY MO 64180 RESEARCH 140213 8 840518 226810 4925494 236900 5992822 CONFERENCE FEES 900099 99920 99920 99920 904 904 228352 191657 632 36695 -632 36063 36063 0 840518 192695 -192695 -192695 5937014 99920 0 -155728 1828572 1828572 233653 233653 425421 330861 21223 73337 1029525 800688 51360 177477 39523 29896 2161 7466 112992 87950 5620 19422 10700 6660 4040 121173 90573 6868 23732 516122 462711 20906 32505 51730 13733 23009 14988 30808 6000 24808 155639 106593 29610 19436 424655 304608 29857 90190 420582 420582 2100 2100 11849 6517 2666 2666 85170 85170 OUTSIDE SERVICES 316186 154825 1416 159945 FEES & PERMITS 166613 20483 3117 143013 BANK CHARGES 149568 392 9536 139640 MEALS & ENTERTAINMENT 82987 30473 10526 41988 143440 73620 9414 60406 6359008 5009390 343407 1006211 80144 714259 1955080 315682 282817 300532 30333 40042 458316 102832 88722 70337 23736 18385 132113 389408 2962539 1881140 158671 85719 854428 267975 1013099 353694 X 1517808 1527446 431632 0 1949440 1527446 2962539 1881140 -421994 0 X X 0 1 X 1 0 X 7093016 6588002 6099492 5904768 5992822 31678100 7093016 6588002 6099492 5904768 5992822 31678100 6622454 25055646 3773 9589 2310 1984 904 18560 31696660 353229 0.79050 0.80010 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 284296 284296 6074712 6359008 467950 116988 0 0 461002 461106 454363 467950 1844421 2766632 193286 166266 320912 284296 964760 115251 115277 113591 116988 461107 691661 4480 483 3997 53920 42939 10981 30322 26915 3407 18385 DEPOSITS 4174 PREPAID GRANT EXPENSE 385234 389408 X 5943208 5562 5562 5937646 -632 -632 5937014 6365202 5562 632 6194 6359008 0 6359008 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 YEARS ENDED DECEMBER 31, 2014 OR 2013. THE ORGANIZATION'S INCOME TAX FILINGS ARE SUBJECT TO AUDIT BY VARIOUS TAXING AUTHORITIES. THE YEARS OF FILINGS OPEN TO THESE AUTHORITIES AND AVAILABLE FOR AUDIT ARE 2011 - 2014. THE ORGANIZATION'S POLICY WITH REGARDS TO INTEREST AND PENALTIES IS TO RECOGNIZE INTEREST THROUGH INTEREST EXPENSE AND PENALTIES THROUGH OTHER EXPENSE. IN EVALUATING THE ORGANIZATION'S TAX PROVISION AND TAX EXEMPT STATUS, INTERPRETATIONS AND TAX PLANNING STRATEGIES WERE CONSIDERED. THE ORGANIZATION BELIEVES THEIR ESTIMATES ARE APPROPRIATE BASED ON THE CURRENT FACTS AND CIRCUMSTANCES PART XI, LINE 4B - OTHER ADJUSTMENTS: LOSS ON DISPOSITION OF FIXED ASSETS = (632) PART XII, LINE 2D - OTHER ADJUSTMENTS: LOSS ON DISPOSITION OF FIXED ASSETS = (632) 1 EUROPE 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 183655 EAST ASIA AND THE PACIFIC 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 49998 0 0 0 0 0 0 233653 0 233653 EUROPE (INCLUDING ICELAND & GREENLAND) ENMC WORKSHOP 9795 WIRE TRANSFER FAIR MARKET VALUE US $ EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM ROBOTICS DEVELOPMENT 15676 WIRE TRANSFER FAIR MARKET VALUE US $ EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM ISBMR 13TH COURSE 10000 WIRE TRANSFER FAIR MARKET VALUE US $ EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM DMD LIAISON POST-NEWCASTLE 8286 WIRE TRANSFER FAIR MARKET VALUE US $ EAST ASIA AND THE PACIFIC PROCYSTEINE TESTING 49998 WIRE TRANSFER FAIR MARKET VALUE US $ EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM TAMOXIFEN STUDY 27350 WIRE TRANSFER FAIR MARKET VALUE US $ EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, AON-INDUCED EXON SKIPPING 98548 WIRE TRANSFER FAIR MARKET VALUE US $ EUROPE (INCLUDING ICELAND & GREENLAND) TACT MEETING 14000 WIRE TRANSFER FAIR MARKET VALUE US $ 8 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 SAM'S DAY 113543 113543 3545 SANDY P. 90124 90124 63 636851 636851 189150 840518 840518 192695 192695 -192695 1 UNIVERSITY OF CALIFORNIA LOS ANGELES BOX 951432 1125 MURPHY HALL 405 HILGARD AVE LOS ANGELES CA 90095 956006143 501(C)(3) 40000 N/A PS 121 ONLINE COURSE DEVELOPMENT UNIVERSITY OF CALIFORNIA DAVIS PO BOX 989062 WEST SACRAMENTO CA 95798 946036494 501(C)(3) 68969 N/A OUTCOMES FOR TRIALS SOLID VENTURES LLC 101 MAIN STREET CAMBRIDGE MA 02142 900943402 32479 N/A ROBOTICS SUIT DEVELOPMENT MARK KRUEGER & ASSOCIATES INC 521 FIFTH AVE 27TH FL NEW YORK NY 10175 133866890 177460 N/A FDA DRAFT POLICY GUIDANCE COONEYWATERS LLC 111 FIFTH AVE SECOND FLOOR NEW YORK NY 10003 12566 N/A FDA DRAFT POLICY GUIDANCE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S 700 CHILDRENS DR COLUMBUS OH 43205 316056230 501(C)(3) 50000 N/A NCH/WELLSTONE/OSU MYOLOGY REVERAGEN BIOPHARMA INC 9700 GREAT SENECA HIGHWAY SUITE 160 160 ROCKVILLE MD 20910 263808415 41659 N/A MICRORNA AS A MODIFIER UNIVERSITY OF CALIFORNIA DAVIS PO BOX 989062 WEST SACRAMENTO CA 95798 946036494 501(C)(3) 12500 N/A NOVAL UPPER EXTREMITY OUTCOMES UNIVERSITY OF ARIZONA 1303 E UNIVERSITY BLVD BOX 3 TUCSON AZ 85719 742652699 501(C)(3) 76695 N/A EUREKA CERTIFICATE COURSE UNIVERSITY OF FLORIDA PO BOX 100267 GAINSVILLE FL 32610 596002052 501(C)(3) 271353 N/A FLORIDA COMBINED THERAPEUTICS THE OHIO STATE UNIVERSITY 1960 KENNY RD COLUMBUS OH 43210 316025986 501(C)(3) 43845 N/A AAA CARDIOMYOPATHY TREATMENT UNIVERSITY OF NEVADA RENO 1664 N VIRGINA AVE ROSS HALL MAIL STOP 325 RENO NV 89557 886000024 501(C)(3) 9375 N/A LAMININ-111 THERAPY UNIVERSITY OF CALIFORNIA LOS ANGELES BOX 951432 1125 MURPHY HALL 405 HILGARD AVE LOS ANGELES CA 90095 956006143 501(C)(3) 52500 N/A RNA_SEQ ANALYSIS FIBROSIS UNIVERSITY OF FLORIDA 123 GRINTER HALL PO BOX FL 32611 596002052 501(C)(3) 8349 N/A MAGNETIC RESONANCE IMAGING UNIVERSITY OF MISSOURI PO BOX 807012 KANSAS CITY MO 64180 436003859 501(C)(3) 93086 N/A SERCA2 GENE THERAPY UNIVERSITY OF CALIFORNIA LOS ANGELES BOX 951432 1125 MURPHY HALL 405 HILGARD AVE LOS ANGELES CA 90095 956006143 501(C)(3) 8336 N/A GENETIC MODIFIERS OF DUCHENNE HUGO W MOSER RESEARCH INSTITUTE 707 N BROADWAY BALTIMORE MD 21205 521524967 501(C)(3) 17500 N/A ENHANCING TRANSPLANT ENVIRONMENT LEE SWEENEY CONSULTING LLC 2100 LOCUST STREET PHILADELPHIA PA 19103 262195280 132000 N/A PROJECT CATALYST UNIVERSITY OF FLORIDA PO BOX 100267 GAINSVILLE FL 32610 596002052 501(C)(3) 20000 N/A NEW DIRECTIONS CONFERENCE UNIVERSITY OF MINNESOTA NW 5957 PO BOX 1450 MINNEAPOLIS MN 55485 416007513 501(C)(3) 113667 N/A IPS CELLS & THERAPEUTIC APPLICATIONS EMORY UNIVERSITY 103B JONES CENTER ATLANTA GA 30322 580566256 501(C)(3) 83930 N/A EMORY GENETICS LAB TESTING HALO THERAPEUTICS LLC 275 GROVE STREET SUITE 2-400 NEWTON MA 02466 275336394 100000 N/A PHARMACOKINETICS OF HT -100 UNIVERSITY OF PENNSYLVANIA 415 CURIE BLVD PHILADELPHIA PA 19104 231352685 501(C)(3) 60000 N/A COMBINED THERAPEUTICS UNIVERSITY OF PENNSYLVANIA 415 CURIE BLVD PHILADELPHIA PA 19104 231352685 501(C)(3) 210000 N/A FAILED REGENERATION IN MD 18 6 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 0 0 0 0 5040 0 400 0 173440 0 0 0 KIMBERLY GALBERAITH COO 144200 0 0 0 0 0 4326 0 14999 0 163525 0 0 0 SHARON HESTERLEE VP OF RESEARCH 150000 0 0 0 0 0 4500 0 12229 0 166729 0 0 0 GROSS & COMPANY INC CPA'S AND BUSINESS ADVISORS SEE BELOW 88456 SEE BELOW 0 SCHEDULE L, PART IV: ITEM B: CFO, NANCY GROSS, OWNS COMPANY SCHEDULE L, PART IV: ITEM D: 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. X 18 191659 FMV AT DATE OF GIFT X FUNDRAISING SUPPLIES 225 45241 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 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 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.