2011-04-09T07:21:02-05:00 2010-12-31 CLARK SCHAEFER HACKETT CO 160 NORTH BREIEL BLVD MIDDLETOWN OH 45042 990 2010-01-01 311405490 THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC PARE 2019449985 401 HACKENSACK AVENUE 9TH FLOOR HACKENSACK NJ 07601 PATRICIA A FURLONG 5134246035 2011-03-07 1 THOMAS L HACKETT 5134245000 2011-03-07 2010 2016-02-24 21:20:13Z X PATRICIA A FURLONG 401 HACKENSACK AVENUE 9TH FLOOR HACKENSACK NJ 07601 9430087 0 X WWW.PARENTPROJECTMD.ORG X 1997 OH SEE SCHEDULE O: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.- TO PARTICIPATE ACTIVELY IN THE INTERNATIONAL DUCHENNE COMMUNITY.- TO ENSURE THAT PPMD IS MANAGED, DEVELOPED, AND FUNDED IN A MANNER CONSISTENT WITH NONPROFIT INDUSTRY BEST PRACTICES. 10 10 13 420 0 0 4538702 7093016 63705 58075 -5586 -58713 -508581 -422775 4088240 6669603 945079 1229504 0 0 838395 1241018 0 0 484017 1753506 2115391 3536980 4585913 551260 2083690 981814 2985828 330671 250307 651143 2735521 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 (DMD) THROUGH RESEARCH, ADVOCACY, EDUCATION AND COMPASSION. 0 0 1504698 17000 58075 WORLDWIDE EDUCATIONAL OUTREACH DIRECTED TO INFORM PATIENTS, FAMILIES AND HEALTHCARE PROVIDERS ABOUT IMPROVING THE QUALITY AND THE LIFE SPAN OF INDIVIDUALS WITH DUCHENNE OR BECKER MUSCULAR DYSTROPHY. 450 INDIVIDUALS ATTENDED THE ORGANIZATION'S ANNUAL CONFERENCE. 2001059 1212504 BASIC AND CLINICAL GRANTS DIRECTED TOWARD STRATEGIES WITH POTENTIAL IMPACT TO THIS GENERATION OF BOYS. INVESTMENTS INCLUDE ANTISENSE OLIGONUCLEOTIDES, IMMUNTE SUPPRESSION, PROTEASE INHIBITORS, DRUG DEVELEPMENT ON VALIDATED TARGETS, ANIMAL MODELS AND VIRAL VECTOR PRODUCTION. RESEARCH GRANT AWARDS - DRUG DEVELOPMENT ON VALIDATED TARGETS AND SUPPORT FOR TOXICITY STUDIES IN BOTH LARGE AND SMALL ANIMAL MODELS. 190870 EDUCATIONAL ADVOCACY- SPONSORED LEGISLATIVE CONFERENCE TO ADVANCE AND SUPPORT NATIONAL INSTITUTE OF HEALTH'S INTEREST IN MUSCULAR DYSTROPHY AND PARTICIPATION IN THE MUSCULAR DYSTROPHY COORDINATING COMMITTEE (MDCC) AND WORK WITH THE CENTER FOR DISEASE CONTROL (CDC) TO ADVANCE CARE CONSIDERATIONS (STANDARDS OF CARE) IN AN EFFORT TO PROMOTE OPTIMAL CARE TO ALL PERSONS DIAGNOSED WITH DUCHENNE OR BECKER MUSCULAR DYSTROPHY. 3696627 1 1 0 1 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 0 0 1 1 0 0 0 0 0 0 0 0 0 1 20 0 13 1 0 0 0 0 0 1 1 0 0 0 0 X 10 10 0 1 0 0 0 0 0 1 1 1 0 1 1 1 1 1 1 1 1 0 AZ AR CA CO CT FL GA IL IN IA KY LA MD MA MI MN MS MO NY NJ OH PA SC TN TX UT VA WA WI WY NC X NANCY L GROSS CPA 5134246035 1208 SUNSET STREET MIDDLETOWN OH 45042 ROBERT NUTT 1.00 X X 0 0 0 DAVID DROHAN 3.00 X 0 0 0 NEIL BRANDOM 1.00 X 0 0 0 JOHN HIATT 1.00 X 0 0 0 JOHN KILLIAN 10.00 X X 0 0 0 DANIEL GAROFALO 4.00 X 0 0 0 MARTY KARLIN 1.00 X 0 0 0 HEINRICH MEERMANN 3.00 X 0 0 0 ROBERT MCDONALD MD 4.00 X 0 0 0 MICHAEL LEE 1.00 X 0 0 0 CHRISTINE PIACENTINO 5.00 X 0 0 0 PATRICIA FURLONG 65.00 X X 170001 0 17678 KIMBERLY GALBERAITH 50.00 X X 145000 0 19264 NANCY GROSS 32.00 X 75164 0 0 TRENT SPEAR 0.00 X 0 0 0 JOHN KEAST 0.00 X 0 0 0 390165 0 36942 2 0 1 0 CORNERSTONE GOVERNMENT AFFAIRS 300 INDEPENDENCE AVE SE WASHINGTON DC 20003 PUBLIC RELATIONS FIRM 308505 MARRIOTT INTERNATIONAL PO BOX 402740 ATLANTA GA 30384 HOTEL SERVICES 163637 BIG DUCK STUDIO 45 MAIN ST SUITE 1036 BROOKLYN NY 11201 CONSULTING 151847 DR H LEE SWEENEY 2100 LOCUST STREET PHILADELPHIA PA 19103 PROJECT CATALYST RESEARCH CONSULTING 151200 INNOLYST INC 180 WARREN ROAD SAN MATEO CA 94401 TECHNOLOGY 116624 5 11872 1454748 740353 4886043 2504178 7093016 2010 CONFERENCE FEES 900099 58075 58075 58075 3773 3773 2275223 2337549 160 -62326 -160 -62486 -62486 0 1454748 422775 -422775 -422775 6669603 58075 0 -481488 1204660 1204660 24844 24844 423647 294534 129113 661971 519055 37174 105742 13748 13748 66261 66261 75391 59042 7447 8902 4291 4291 15000 15000 364006 340006 24000 63534 10431 35140 17963 70364 50434 19930 123270 83920 22834 16516 216590 155005 20436 41149 279588 279588 14 14 12797 4351 4223 4223 TRANSLATION 317757 317757 0 0 CDC ACTIVITY 228791 228791 0 0 BANK CHARGES 99390 0 12362 87028 FEES & PERMITS 94467 14350 0 80117 MEALS & ENTERTAINMENT 83035 30641 12630 39764 142497 79218 19666 43613 4585913 3696627 405269 484017 182591 177132 363133 2115574 245959 243577 4287 26382 137725 116949 61378 40689 18909 20689 30750 29210 254775 981814 2985828 169352 175005 161319 75302 330671 250307 X 651143 2735521 651143 2735521 981814 2985828 X 2083690 688 X X 0 1 1 X 1 1 X 4316221 4429937 4512487 4538702 7093016 24890363 4316221 4429937 4512487 4538702 7093016 24890363 2037817 22852546 3611 4816 3136 156 3773 15492 241 241 24906096 1253029 0.91750 0.99320 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 190870 190870 4395043 4585913 379296 94824 0 0 380763 366655 326849 379296 1453563 2180345 309553 372365 189679 190870 1062467 95191 91664 81712 94824 363391 545087 4480 24 4456 56898 40665 16233 20689 DEPOSITS 3785 PREPAID GRANT EXPENSE 250990 254775 6669603 4585913 2083690 688 688 2084378 6670502 688 51 739 6669763 -160 -160 6669603 4586124 51 160 211 4585913 0 4585913 DESCRIPTION OF UNCERTAIN TAX POSITIONS UNDER FIN 48: PART X: 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, 2010. PART XII, LINE 4B - OTHER ADJUSTMENTS: LOSS ON DISPOSITION OF FIXED ASSETS PART XIII, LINE 2D - OTHER ADJUSTMENTS: LOSS ON DISPOSITION OF FIXED ASSETS 1 EUROPE 0 GRANTS TO RECIPIENTS LOCATED IN REGION 22000 NORTH AMERICA 0 GRANTS TO RECIPIENTS LOCATED IN REGION 10000 0 0 0 32000 0 32000 EUROPE ERICE ESBMR 15000 WIRE TRANSFER FMV - US DOLLARS 0 1 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 OTHER INFORMATION SCHEDULE F, PART V SCHEDULE F, PART II, LINE 1: ACCRUAL METHOD DREAM AUCTION 291356 291356 109827 ECLIPSING DUCHENNE 142584 142584 20910 30 994022 994022 249254 1427962 1427962 379991 379991 -379991 1 PROTHELIA INC 30 HAVEN STREET MILFORD MA 01757 320224090 9167 N/A PROTHELIA THERAPY PTC THERAPEUTICS 100 CORPORATE COURT SOUTH PLAINFIELD NJ 070802449 043416587 125000 N/A RESEARCH EMORY GENETICS LABORATORY 2165 N DECATUR ROAD DECATUR GA 300335307 580566256 501(C)(3) 120536 N/A RESEARCH UNIVERSITY OF FLORIDA PO BOX 115500 GAINESVILLE FL 326115500 596002052 501(C)(3) 100000 N/A RESEARCHRESEARCH UNIVERSITY OF WASHINGTON 1705 NE PACIFIC STREET H-418 HSB BOX 357290 SEATTLE WA 091957290 916001537 501(C)(3) 54167 N/A FELLOWSHIP LEE SWEENEY CONSULTING LLC 2100 LOCUST STREET PHILADELPHIA PA 19103 262195280 151200 N/A PROJECT CATALYST THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITAL 700 CHILDRENS DRIVE COLUMBUS OH 43205 316056230 501(C)(3) 215050 N/A RESEARCH UNIVERSITY OF PENNSYLVANIA 3900 DELANCEY STREET PHILADELPHIA PA 191046085 231352685 501(C)(3) 9000 N/A RESEARCHPROJECT CATALYST REGENTS OF UNIVERSITY OF CALIFORNIA 405 HILGARD AVE 1125 MURPHY HALL LOS ANGELES CA 900959000 956006143 501(C)(3) 60000 N/A RESEARCH CURATORS OF UNIVERSITY OF MISSOURI 310 JESSE HALL COLUMBIA MO 65211 436003859 501(C)(3) 67707 N/A RESEARCH UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL CB3290 KENAN LABS CHAPEL HILL NC 275993290 566001393 501(C)(3) 33333 N/A FELLOWSHIP UNIVERSITY OF PENNSYLVANIA B400 RICHARDS BUILDING 3700 HAMILTON WALK PHILADELPHIA PA 191046085 231352685 501(C)(3) 237500 N/A PROJECT CATALYST, RESEARCH 9 12 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 0 0 0 0 0 0 0 0 0 PATRICIA FURLONG 170001 0 0 0 0 0 5100 0 12578 0 187679 0 0 0 KIMBERLY GALBERAITH 145000 0 0 0 0 0 4350 0 14914 0 164264 0 0 0 GROSS & COMPANY INC CFO, NANCY GROSS, OWNS COMPANY 75164 THE ORGANIZATION HAS HIRED NANCY GROSS TO ACT AS CFO. 0 X 9 4070 FMV X 18971 FMV X 10 2367083 FMV AT DATE OF GIFT X 10 4622 FMV X FOOD/ENTERTAINMENT DONATED FOR RAFFLES 395 94988 FMV X GIFT CERTIFICATES 96 14445 FACE VALUE OF CERTIFICATE 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 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 2010 BUDGET COMPLIED WITH INDUSTRY STANDARDS. 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. CONTACT ADDRESSES FOR OFFICERS, DIRECTORS, ETC FORM 990, PART VII CHRISTINE PIACENTINO - 1561 JACKSON ROAD, PENFIELD, NY 14526. ROBERT NUTT - 708 67TH STREET, DARIEN, IL 60561. JOHN KILLIAN - 2650 CEDAR SPRINGS RD, SUITE 850, DALLAS, TX 75201. CHANGES IN NET ASSETS OR FUND BALANCES: FORM 990, PART XI, LINE 5: NET UNREALIZED GAINS ON INVESTMENTS: 688. FORM 990, PART XI, LINE 2C THE PROCESS HASN'T CHANGED FROM PRIOR YEAR.