2016-06-27T14:52:36-05:00 2015-12-31 310800053 CLARK SCHAEFER HACKETT & CO 10100 INNOVATION DR SUITE 400 DAYTON OH 45342 990 2015-01-01 311405490 THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC PARE 5134240696 401 HACKENSACK AVENUE NO 9TH FL HACKENSACK NJ 07601 PATRICIA A FURLONG FOUNDING PRESIDENT/CEO 5134240696 2016-06-16 1 STEPHANIE R PYLES CPA P00613386 9372260070 2016-06-16 2015 2016-09-27 15:27:22Z PATRICIA A FURLONG 401 HACKENSACK AVENUE NO 9TH FL HACKENSACK NJ 07601 11006890 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. 8 8 21 0 0 0 5992822 8725485 99920 161900 36967 -14278 -192695 -197600 5937014 8675507 2062225 3023969 0 0 1607461 2194247 0 0 761762 2689322 2486578 6359008 7704794 -421994 970713 1881140 2735082 353694 236923 1527446 2498159 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 5092322 2872225 161900 SUPPORT FOR RESEARCH TO ACCELERATE TREATMENTS AND A CURE FOR DUCHENNE MUSCULAR DYSTROPHY INCLUDING, BUT NOT LIMITED TO, 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. 1165370 151744 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. 264216 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. 6521908 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 59 0 21 1 0 0 0 0 0 0 0 0 0 0 X 8 8 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 5.00 X 0 0 0 ELLEN WAGNER BOARD MEMBER 8.00 X 0 0 0 ANESSA FEHSENFELD BOARD CHAIRMAN 15.00 X X 0 0 0 CHRISTINE PIACENTINO BOARD SECRETARY 8.00 X X 0 0 0 LANCE HESTER TREASURER 15.00 X X 0 0 0 JOHN KILLIAN MEMBER 10.00 X 0 0 0 JONATHAN FINDER MEMBER 2.00 X 0 0 0 JOANNA JOHNSON MEMBER 2.00 X 0 0 0 NANCY GROSS CFO THROUGH DEC 15 32.00 X 104087 0 0 PATRICIA FURLONG FOUNDING PRESIDENT/CEO 65.00 X 197346 0 5233 KIMBERLY GALBERAITH COO 50.00 X 155475 0 35334 ANNE KENNEDY SVP OF PUBLIC POLICY 40.00 X 136482 0 33582 KATHI KINNETT SR VP OF CLINICAL CARE 40.00 X 113250 0 2849 RYAN FISCHER DIRECTOR OF COMMUNITY OUTREACH & ADVOCACY 40.00 X 103591 0 10319 KAYLAN MOITOSO SR DIRECTOR OF DEVELOPMENT 40.00 X 114811 0 37423 JOHN PORTER FORMER CEO 40.00 X 190000 0 0 1115042 0 124740 8 0 1 0 REVERAGEN BIOPHARMA INC 8070 GEORGIA AVE SUITE 416 SILVER SPRING MD 20910 RESEARCH 750000 HALO THERAPEUTICS LLC 275 GROVE STREET SUITE2-400 NEWTON MA 02466 RESEARCH 400000 MARRIOTT HOTEL SERVICES INC PO BOX 403717 ATLANTA GA 30384 HOTEL 287212 UNIVERSITY OF FLORIDA FOUNDATION PO BOX 100267 GAINESVILLE FL 32610 RESEARCH 225576 FAEGREBD CONSULTING 75 REMITTANCE DRIVE DEPT 6952 CHICAGO IL 60675 RESEARCH & EDUCATIONAL SVCS 196082 13 1038163 7687322 2183078 8725485 CONFERENCE FEES 900099 161900 161900 161900 377 377 2119128 2129792 3991 -10664 -3991 -14655 -14655 0 1038163 197600 -197600 -197600 8675507 161900 0 -211878 2912636 2912636 111333 111333 1279965 998953 151676 129336 750386 625211 42979 82196 35533 29533 2060 3940 128363 108750 6734 12879 33842 22275 11567 7407 6108 446 853 565956 495956 17000 53000 66322 19174 32985 14163 32438 6000 26438 156124 110873 29527 15724 409236 303356 29611 76269 484483 484483 1893 1893 19887 8225 5831 5831 BANK CHARGES 172898 11630 161268 OUTSIDE SERVICES 169223 166794 1335 1094 FEES & PERMITS 122824 18470 14377 89977 MEALS & ENTERTAINMENT 100139 35391 11630 53118 143906 58387 23405 62114 7704794 6521908 421124 761762 714259 546987 315682 1504956 300532 347742 40042 37803 102832 165379 127876 58365 18385 69511 389408 62704 1881140 2735082 85719 130531 267975 106392 353694 236923 X 1527446 2498159 1527446 2498159 1881140 2735082 970713 0 X X 0 1 X 1 0 X 6588002 6099492 5904768 5992822 8725485 33310569 6588002 6099492 5904768 5992822 8725485 33310569 5169455 28141114 9589 2310 1984 904 377 15164 33325733 457054 0.84440 0.79050 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 264216 264216 7440578 7704794 535240 133810 0 0 461106 454363 467950 535240 1918659 2877989 166266 320912 284296 264216 1035690 115277 113591 116988 133810 479666 719499 6180 614 5566 88571 30568 58003 33125 27183 5942 69511 X 8680614 1116 1116 8679498 -3991 -3991 8675507 7709901 1116 3991 5107 7704794 0 7704794 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, 2015 OR 2014. PART XI, LINE 4B - OTHER ADJUSTMENTS: LOSS ON DISPOSITION OF FIXED ASSETS -3,991. PART XII, LINE 2D - OTHER ADJUSTMENTS: LOSS ON DISPOSITION OF FIXED ASSETS 3,991. 0 EUROPE 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 111333 0 0 0 0 0 0 111333 0 111333 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM ROBOTICS DEVELOPMENT 96893 WIRE TRANSFER FAIR MARKET VALUE US $ EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM TACT MEETING 12000 WIRE TRANSFER FAIR MARKET VALUE US $ 2 0 0 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 150229 150229 10719 SANDY P. 89712 89712 19744 52 798222 798222 167137 1038163 1038163 197600 197600 -197600 1 UNIVERSITY OF CALIFORNIA LOS ANGELES BOX 951432 1125 MURPHY HALL 405 HILGARD AVE LOS ANGELES CA 90095 956006143 501(C)(3) 220000 N/A PS 121 ONLINE COURSE DEVELOPMENT/RNA SEQ ANALYSIS FIBROSIS/EXON SKIPPING ENHANCERS/EHNANCING TRANSPLANT ENVIRONMENT SOLID VENTURES LLC 101 MAIN STREET CAMBRIDGE MA 02142 900943402 67521 N/A ROBOTICS SUIT DEVELOPMENT MARK KRUEGER & ASSOCIATES INC 521 FIFTH AVE 27TH FL NEW YORK NY 10175 133866890 71333 N/A FDA DRAFT POLICY GUIDANCE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S 700 CHILDRENS DR COLUMBUS OH 43205 316056230 501(C)(3) 45000 N/A NCH/WELLSTONE/OSU MYOLOGY REVERAGEN BIOPHARMA INC 9700 GREAT SENECA HIGHWAY SUITE 160 160 ROCKVILLE MD 20910 263808415 750000 N/A VPB15 TOXICOLOGY STUDIES UNIVERSITY OF ARIZONA 1303 E UNIVERSITY BLVD BOX 3 TUCSON AZ 85719 742652699 501(C)(3) 10000 N/A EUREKA CERTIFICATE COURSE UNIVERSITY OF FLORIDA PO BOX 100267 GAINSVILLE FL 32610 596002052 501(C)(3) 225576 N/A FLORIDA COMBINED THERAPEUTICS THE OHIO STATE UNIVERSITY 1960 KENNY RD COLUMBUS OH 43210 316025986 501(C)(3) 21875 N/A AAA CARDIOMYOPATHY TREATMENT UNIVERSITY OF MISSOURI PO BOX 807012 KANSAS CITY MO 64180 436003859 501(C)(3) 55000 N/A SERCA2 GENE THERAPY LEE SWEENEY CONSULTING LLC 2100 LOCUST STREET PHILADELPHIA PA 19103 262195280 38500 N/A PROJECT CATALYST UNIVERSITY OF MINNESOTA NW 5957 PO BOX 1450 MINNEAPOLIS MN 55485 416007513 501(C)(3) 18333 N/A IPS CELLS & THERAPEUTIC APPLICATIONS EMORY UNIVERSITY 103B JONES CENTER ATLANTA GA 30322 580566256 501(C)(3) 101740 N/A EMORY GENETICS LAB TESTING HALO THERAPEUTICS LLC 275 GROVE STREET SUITE 2-400 NEWTON MA 02466 275336394 400000 N/A PHARMACOKINETICS OF HT -100 UNIVERSITY OF PENNSYLVANIA 415 CURIE BLVD PHILADELPHIA PA 19104 231352685 501(C)(3) 192500 N/A FAILED REGENERATION IN MD JOHNS HOPKINS UNIVERSITY 624 N BROADWAY BALTIMORE MD 21205 520595110 501(C)(3) 100000 N/A PULMONARY BENEFITS IN DMD CATABASIS PHARMACEUTICALS INC ONE KENDALL SQUARE CAMBRIDGE MA 02139 263687168 91667 N/A CLINICAL TRIAL SUPPORT UNIVERSITY OF WASHINGTON 1705 NE PACIFIC STREET SEATTLE WA 98195 916006143 501(C)(3) 148363 N/A SPECTRIN-LIKE REPEATS TALEM TECHNOLOGIES 400 RENAISSANCE CENTER SUITE 2900 DETROIT MI 48243 800915218 70531 N/A WHEELCHAIR METHODS AND METRICS MACHINA CARNIS CONSULTING LLC 9210 NW 59TH STREET GAINSVILLE FL 32653 472577237 93500 N/A PROJECT CATALYST CRITICAL PATH INSTITUTE 1730 E RIVER ROAD SUITE 200 TUCSON AZ 85718 201991334 125000 N/A C-PATH SPONSORED RESEARCH SOMOLOGIC INC 2945 WILDERNESS PLACE BOULDER CO 80301 522195896 10940 N/A SOMALOGIC DATA ANALYSIS SUSAN WARD 50000 N/A TRAJECTORY ANALYSIS PROJECT 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 197346 0 0 0 0 0 4833 0 400 0 202579 0 0 0 KIMBERLY GALBERAITH COO 155475 0 0 0 0 0 3978 0 31356 0 190809 0 0 0 ANNE KENNEDY SVP OF PUBLIC POLICY 136482 0 0 0 0 0 3604 0 29978 0 170064 0 0 0 KAYLAN MOITOSO SR DIRECTOR OF DEVELOPMENT 114811 0 0 0 0 0 0 0 37423 0 152234 0 0 0 JOHN PORTER FORMER CEO 190000 0 0 0 0 0 0 0 0 0 190000 0 0 0 GROSS & COMPANY INC CPA'S AND BUSINESS ADVISORS SEE BELOW 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 2130332 FMV AT DATE OF GIFT X FUNDRAISING SUPPLIES 225 52746 FMV AT 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 3 THE ORGANIZATION HAS HIRED AN INDEPENDENT CONTRACTOR TO ACT AS THEIR CFO. 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 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.