2026-08-17T11:51:46-05:00 2025-12-31 223604710 JAMES M WOOD CPA 603B OMNI DRIVE HILLSBOROUGH NJ 08844 990 2025-01-01 311405490 THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC PARE 2012508440 1012 14TH STREET NW 500 WASHINGTON DC 20005 PATRICIA A FURLONG FOUNDING PRESIDENT/CEO 2012508440 2026-08-17 1 JAMES M WOOD P00310420 9084311700 2026-07-29 X 2025 2025-03-06 01:10:19Z PATRICIA A FURLONG 1012 14TH STREET NW 500 WASHINGTON DC 20005 13108512 0 X WWW.PARENTPROJECTMD.ORG X 1997 OH END DUCHENNE MUSCULAR DYSTROPHY THROUGH RESEARCH, ADVOCACY, EDUCATION, & OPTIMAL MEDICAL CARE. 13 13 28 550 0 0 10008956 8061163 2234268 2310082 150586 174692 1917951 1503509 14311761 12049446 2650583 1500817 0 0 4089108 4341780 0 0 626376 6141711 6053356 12881402 11895953 1430359 153493 12567424 12713304 1109314 1186492 11458110 11526812 X THE PARENT PROJECT MUSCULAR DYSTROPHY (PPMD) FIGHTS TO END DUCHENNE. WE ACCELERATE RESEARCH, RAISE OUR VOICES TO IMPACT POLICY, DEMAND OPTIMAL CARE FOR EVERY SINGLE FAMILY, AND STRIVE TO ENSURE ACCESS TO APPROVED THERAPIES. 0 0 6955873 1493317 3932180 RESEARCHPPMD'S RESEARCH PROGRAM IDENTIFIES AND FUNDS THE MOST PROMISING NEAR- AND LONG-TERM THERAPEUTIC STRATEGIES FOR DUCHENNE AND BECKER MUSCULAR DYSTROPHY. WE INVEST ACROSS THE DEVELOPMENT PIPELINE-FROM BASIC SCIENCE TO CLINICAL APPLICATION-WHILE ACTIVELY STIMULATING NEW RESEARCH TO KEEP THE THERAPEUTIC PIPELINE ROBUST. THROUGH INITIATIVES LIKE THE DUCHENNE DRUG DEVELOPMENT ROUNDTABLE, WE FOSTER INDUSTRY COLLABORATION TO HARMONIZE THE CLINICAL TRIAL LANDSCAPE AND ACCELERATE PROGRESS.IN ADDITION TO FUNDING ACADEMIC AND PRE-CLINICAL RESEARCH, OUR VENTURE PATHWAYS PROGRAM INVESTS IN EARLY-STAGE BIOPHARMACEUTICAL COMPANIES TO DRIVE THE DEVELOPMENT OF NOVEL TREATMENTS FOR DUCHENNE AND BECKER MUSCULAR DYSTROPHY.THE DUCHENNE REGISTRYTHE DUCHENNE REGISTRY REMAINS THE LARGEST PATIENT-REPORTED REGISTRY FOR DUCHENNE, BECKER AND CARRIER FEMALES. OVER 6,000 PEOPLE FROM MORE THAN 125 COUNTRIES HAVE JOINED SINCE 2007, CONTRIBUTING OVER 18 YEARS OF DATA. REGISTRY DATA HAS BEEN EXPORTED FOR RESEARCHERS OVER 80 TIMES, AND THE REGISTRY HAS BEEN USED TO IDENTIFY AND CONNECT PEOPLE WITH DUCHENNE AND BECKER TO MORE THAN 100 CLINICAL TRIALS AND RESEARCH STUDIES. PPMD ALSO MANAGES COMPLEMENTARY INITIATIVES:THE INTERCHANGE PROVIDES A CENTRAL PATIENT-AND CLINICIAN REPORTED DATA WAREHOUSE SO ALL TYPES OF DUCHENNE DATA FROM VARIOUS SOURCES, INCLUDING THE DUCHENNE REGISTRY, ACADEMIC CONSORTIA, REAL-WORLD DATA FROM ELECTRONIC HEALTH RECORDS (EHRS), AND POST-MARKET STUDIES FROM INDUSTRY PARTNERS, ARE COLLECTED AND ANALYZED IN ONE PLACE. BY DE-SILOING DATA, THE INTERCHANGE DELIVERS A MORE COMPLETE PICTURE OF DUCHENNE AND BECKER AND HELPS CLINICAL RESEARCHERS AND PARTNERS IN THERAPY DEVELOPMENT ADDRESS COMMON RESEARCH CHALLENGES. THUS, RESEARCHERS CAN EFFECTIVELY CONDUCT THEIR WORK AND ACCELERATE SCIENTIFIC DISCOVERY AND PATIENT ACCESS TO NEW THERAPIES.CAREPPMD'S CARE PROGRAM ENSURES INDIVIDUALS WITH DUCHENNE HAVE ACCESS TO EXPERT CLINICAL TEAMS, APPROVED THERAPIES, AND COMPREHENSIVE MULTIDISCIPLINARY CARE ACROSS THEIR LIFESPAN. WE IDENTIFY GAPS IN CARE AND WORK COLLABORATIVELY WITH GLOBAL HEALTHCARE PROVIDERS TO CLOSE THOSE GAPS AND IMPROVE OUTCOMES.OUR CERTIFIED DUCHENNE CARE CENTER (CDCC) PROGRAM CERTIFIES CARE CENTERS THAT MEET RIGOROUS STANDARDS ALIGNED WITH THE DUCHENNE CARE GUIDELINES. THESE CENTERS COMMIT TO DELIVERING CONSISTENT, HIGH-QUALITY CARE BASED ON BEST PRACTICES. 2438077 7500 EDUCATIONPPMD'S EDUCATION INITIATIVES EQUIP FAMILIES, HEALTHCARE PROVIDERS, AND THE BROADER COMMUNITY WITH THE INFORMATION NEEDED TO NAVIGATE DUCHENNE CARE ACROSS ALL STAGES OF THE DISORDER. WE PARTNER WITH CLINICAL AND SCIENTIFIC EXPERTS TO DEVELOP ACCURATE, ACCESSIBLE RESOURCES AND SHARE THEM BROADLY. WE ALSO COLLABORATE WITH DOMESTIC AND INTERNATIONAL ORGANIZATIONS TO ENSURE EDUCATIONAL MATERIALS REACH GLOBAL AUDIENCES.ENGAGEMENTPPMD FOSTERS A STRONG, INFORMED, AND CONNECTED COMMUNITY. EACH SUMMER, WE HOST THE WORLD'S LARGEST DUCHENNE CONFERENCE, BRINGING TOGETHER FAMILIES, CLINICIANS, RESEARCHERS, AND INDUSTRY PARTNERS TO SHARE UPDATES AND BUILD CONNECTIONS.THROUGHOUT THE YEAR, WE OFFER VIRTUAL AND IN-PERSON GATHERINGS FOR SUBGROUPS INCLUDING DUCHENNE CARRIERS, SIBLINGS, DADS, GRANDPARENTS, AND NEWLY DIAGNOSED FAMILIES.THROUGH PPMD TOGETHER, WE ALSO PROVIDE PERSONALIZED ONE-ON-ONE VIRTUAL SUPPORT TO HELP FAMILIES NAVIGATE THEIR INDIVIDUAL CHALLENGES. 1041438 ADVOCACYPPMD LEADS FEDERAL AND STATE-LEVEL ADVOCACY TO IMPROVE ACCESS TO CARE, ACCELERATE THERAPEUTIC DEVELOPMENT, AND ENSURE REGULATORY FRAMEWORKS SUPPORT THE DUCHENNE COMMUNITY. WE PROVIDE ADVOCATES WITH THE TOOLS AND INFORMATION NEEDED TO ENGAGE POLICYMAKERS AND BUILD CONGRESSIONAL CHAMPIONS.WE ALSO SPEARHEAD EFFORTS TO EXPAND NEWBORN SCREENING FOR DUCHENNE, ENSURING EARLY DIAGNOSIS AND ACCESS TO INTERVENTIONS. 10435388 1 1 0 1 0 0 0 0 0 0 1 1 1 0 1 0 1 0 0 0 1 1 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 30 0 1 28 1 0 0 0 0 0 0 0 0 0 0 0 0 X 13 13 1 0 0 0 0 0 0 1 0 0 0 1 1 1 1 1 1 1 1 0 AL AR CA FL GA HI IL KS KY MA MD MI MN MS NC NH NJ NM NY OR PA RI SC TN VA WI WV X X THE ORGANIZATION 2012508440 1012 14TH STREET NW 500 WASHINGTON DC 20005 JOHN KILLIAN CHAIR 8.00 X X 0 0 0 ALPA KHUSHALANI VICE CHAIR 6.00 X X 0 0 0 DAWN REZKALLA TREASURER 6.00 X X 0 0 0 DEANNE FRIAR SECRETARY 6.00 X X 0 0 0 COLIN RENSCH DIRECTOR 2.00 X 0 0 0 MICHELLE FURLONG DIRECTOR 2.00 X 0 0 0 SCOTT PERRIN PHD DIRECTOR 2.00 X 0 0 0 MARU CHAPUR DIRECTOR 2.00 X 0 0 0 SUSAN HUANG DIRECTOR 2.00 X 0 0 0 SUSAN APKON DIRECTOR 2.00 X 0 0 0 TIM CRIPE MD PHD DIRECTOR 2.00 X 0 0 0 LINDA CRIPE MD EMERITUS 2.00 X 0 0 0 DAVID HOFSTEIN JD EMERITUS 2.00 X 0 0 0 PATRICIA A FURLONG PRESIDENT AND CEO 40.00 X 391500 0 14365 KAYLAN MOITOSO CHIEF BUSINESS OFFICER 40.00 X 316440 0 10996 MEGAN FREED CHIEF OF STRATEGIC INITIATIVES 40.00 X 209234 0 18370 ANN MARTIN VICE PRESIDENT, COMMUNITY RESEARCH & GENETIC SVCS. 40.00 X 186369 0 22346 RACHEL SCHRADER VICE PRESIDENT, CLINICAL CARE & EDUCATION 40.00 X 177589 0 9069 KIMBERLY GALBERAITH PRINCIPAL CREATIVE DIRECTOR 40.00 X 190487 0 22725 1471619 0 97871 16 0 1 0 FAEGRE DRINKER BIDDLE & REATH LLP 75 REMITTANCE DRIVE DEPT 6952 CHICAGO IL 60675 LEGAL AND REGULATORY CONSULTING 361007 PROMETHEUS RESEARCH 4820 EMPEROR BLVD DURHAM NC 27703 DATA TECHNOLOGY 247145 YOUR PART TIME CONTROLLER 1600 MARKET STREET SUITE 3425 PHILADELPHIA PA 19103 ACCOUNTING 138635 EZE CASTLE 55 COURT ST SUITE 520 BOSTON MA 02108 IT SERVICES 125590 4 3207704 4853459 8061163 OTHER MEETINGS AND CONFERENCES 900099 952608 952608 CONFERENCE INCOME 900099 806840 806840 PROGRAM SERVICE REVENUE 900099 550634 550634 2310082 175893 175893 715514 716715 -1201 -1201 -1201 222561 3207704 342351 -119790 -119790 REVENUE SHARING 900099 1594356 1594356 OTHER 900099 15803 15803 RECOVERY OF PREVIOUSLY AWARDED GR 900099 13707 13707 -567 -567 1623299 12049446 3932180 0 56103 X 1344321 1344321 156496 156496 391500 332775 19575 39150 3237043 2764416 212177 260450 151926 123531 16119 12276 308187 250560 32669 24958 253124 205816 26856 20452 120808 104738 10335 5735 24000 24000 1254470 968076 260681 25713 38539 38422 117 7904 1110 6317 477 67586 59886 7700 183107 183107 8117 7116 575 426 21032 15194 4449 1389 ANNUAL CONFERENCE 1390799 1390799 0 0 PROGRAM SUPPLIES 662753 662753 0 0 MEALS 592219 586150 5199 870 TRAVEL 515250 458173 26210 30867 1166772 781949 181327 203496 11895953 10435388 834189 626376 5201236 5041500 1500774 1501070 940770 1284622 550137 814026 87886 100321 474736 322705 57034 51451 14267 5583 505462 419791 2357590 2247625 850479 850479 84087 125582 12567424 12713304 458828 576122 556646 75000 17450 464448 76390 70922 1109314 1186492 X 9034708 9746314 2423402 1780498 11458110 11526812 12567424 12713304 153493 -84791 0 X X 0 1 X 1 0 X 9127402 9959415 12802680 10008956 8061163 49959616 9127402 9959415 12802680 10008956 8061163 49959616 17715560 32244056 49538 9584 88182 149903 175893 473100 329826 329826 50762542 7039783 0.63520 0.62800 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 20622 120000 140622 11755331 11895953 744798 186200 0 0 701882 755624 794070 744798 2996374 4494561 107134 110148 88121 140622 446025 175471 188906 198518 186200 749095 1123643 27134 30148 18121 20622 96025 57034 51451 5583 5583 REAL ESTATE INVESTMENT TRUST 280676 F U.S. TREASURY BONDS 1966949 F 2247625 AGREEMENT FOR FUTURE EQUITY 850479 C 850479 OPERATING LEASE LIABILITIES 70922 70922 11964655 -84791 -84791 12049446 0 12049446 11895953 0 11895953 0 11895953 0 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 111538 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 43311 0 0 0 0 0 0 154849 0 154849 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES CARE FELLOWSHIP 20000 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM RESEARCH - BRAIN PROJECT 27590 WIRE TRANSFER 0 EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH - MEETING SUPPORT 17721 WIRE TRANSFER 0 NORTH AMERICA RESEARCH- JENSEN SPECIFIC 91538 0 0 0 0 0 0 0 SAM'S NIGHT 1802728 1802728 11610 WALT DISNEY WORLD EVENT 355173 345215 9958 113032 33 1272364 1059761 212603 217709 3430265 3207704 222561 342351 342351 -119790 1 ANALYSIS GROUPCTAP 111 HUNTINGTON AVE 14TH FLOOR BOSTON MA 02199 042727260 C CORPORATION 50000 0 RESEARCH- SUPPORT OF COLLECTIVE ANALYSIS TRAJECTORY PROJECT ARKANSAS CHILDREN'S HOSPITAL 13 CHILDRENS WAY LITTLE ROCK AR 72202 710694931 501(C)(3) 7500 0 RESEARCH- DORI EHR PROGRAM CHILDREN'S NATIONAL MEDICAL CENTER 111 MICHIGAN AVE NW WASHINGTON DC 20010 521654453 501(C)(3) 32740 0 RESEARCH- DORI EHR PROGRAM CRITICAL PATH 1730 E RIVER ROAD SUITE 200 TUCSON AZ 85718 201991334 501(C)(3) 100000 0 RESEARCH- SUPPORT OF DUCHENNE REGULATORY SCIENCE CONSORTIUM DUKE UNIVERSITY PO BOX 104132 DURHAM NC 27708 560532129 501(C)(3) 29039 0 RESEARCH- DORI EHR PROGRAM THE GENERAL HOSPITAL CORP DBS MASSACHUSETTS GENERAL HOSPITAL 55 FRUIT ST BOSTON MA 02114 042697983 501(C)(3) 100000 0 RESEARCH- FELLOWSHIP NATIONWIDE CHILDREN'S HOSPITAL 700 CHILDRENS DR COLUMBUS OH 43205 316056230 501(C)(3) 60000 0 RESEARCH- MEETING SUPPORT NORTHWESTERN UNIVERSITY 633 CLARK ROOM G-547 EVANSTON IL 60208 362167817 501(C)(3) 93597 0 RESEARCH- WELLSTONE SUPPLEMENT OHIO STATE UNIVERSITY 1960 KENNY ROAD COLUMBUS OH 43210 316025986 134961 0 RESEARCH- PATIENT PREFERENCE THE RESEARCH FOUNDATION FOR SUNY PO BOX 9 ALBANY NY 12201 141368361 501(C)(3) 15000 0 RESEARCH- GENE THERAPY UNIVERSITY OF COLORADO AT DENVER MAIL STOP F428 BLDG 500 13001 E 17TH PL AURORA CO 80045 846000555 12500 0 RESEARCH- DORI EHR PROGRAM UNIVERSITY OF FLORIDA BOARD OF TRUSTEES 219 GRINTER HALL GAINESVILLE FL 32611 596002052 501(C)(3) 199875 0 RESEARCH- WELLSTONE SUPPLEMENT UNIVERSITY OF FLORIDA BOARD OF TRUSTEES 219 GRINTER HALL GAINESVILLE FL 32611 596002052 501(C)(3) 65000 0 RESEARCH- BIOMARKER UNIVERSITY OF FLORIDA FOUNDATION 1200 NEWELL DRIVE ARB R5-2 GAINESVILLE FL 32610 590974739 501(C)(3) 300000 0 RESEARCH- PRECLINICAL THERAPEUTIC ASSESSMENT LAB REGENTS OF UNIVERSITY OF MINNESOTA 2221 UNIVERSITY AVE SE STE 100 MINNEAPOLIS MN 55414 416007513 25000 0 RESEARCH- CLINICAL TRIALS UNIVERSITY OF ROCHESTER MEDICAL CENTER 601 ELMWOOD AVE PO BOX 673 ROCHESTER NY 14642 160743209 25000 0 RESEARCH- NEWBORN SCREENING UNIVERSITY OF UTAH 201 S PRESIDENTS CIRCLE RM 159 SALT LAKE CITY UT 84112 876000525 501(C)(3) 25000 0 RESEARCH- DORI EHR PROGRAM UT SOUTHWESTERN MED 5323 HARRY HINES BLVD MC 9029 DALLAS TX 75390 756002868 25000 0 RESEARCH- DORI EHR PROGRAM VANDERBILT (DR JONATHAN SOSLOW) 1211 MEDICAL CENTER DR NASHVILLE TN 37232 352528741 501(C)(3) 10000 0 RESEARCH- CARDIAC INITIATIVE VANDERBILT 1211 MEDICAL CENTER DR NASHVILLE TN 37232 352528741 501(C)(3) 10000 0 RESEARCH- NEWBORN SCREENING VIRGINIA TECH FOUNDATION 220 GILBERT STR BLACKSBURG VA 24061 540721690 501(C)(3) 7500 0 RESEARCH- ROBOTICS YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 06508 060646973 C CORPORATION 25161 0 RESEARCH- DORI EHR PROGRAM 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 0 0 0 0 0 0 0 0 0 PATRICIA A FURLONG PRESIDENT AND CEO 362500 0 29000 0 0 0 14333 0 32 0 405865 0 0 0 KAYLAN MOITOSO CHIEF BUSINESS OFFICER 293000 0 23440 0 0 0 10867 0 129 0 327436 0 0 0 MEGAN FREED CHIEF OF STRATEGIC INITIATIVES 205134 0 4100 0 0 0 6927 0 11443 0 227604 0 0 0 KIMBERLY GALBERAITH PRINCIPAL CREATIVE DIRECTOR 179714 0 10773 0 0 0 8965 0 13760 0 213212 0 0 0 ANN MARTIN VICE PRESIDENT, COMMUNITY RESEARCH & 172569 0 13800 0 0 0 9380 0 12966 0 208715 0 0 0 RACHEL SCHRADER VICE PRESIDENT, CLINICAL CARE & EDUC 167539 0 10050 0 0 0 8940 0 129 0 186658 0 0 0 X 6 586819 FMV ON DATE OF GIFT 0 1 0 FORM 990, PART VI, SECTION A, LINE 2 MICHELLE FURLONG - DIRECTOR IS THE DAUGHTER OF PATRICIA FURLONG CEO, OFFICER 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 11B THE 990 IS COMPLETED BY AN INDEPENDENT CPA FIRM AND A DRAFT IS PRESENTED TO THE BOARD MEMBERS FOR REVIEW. THE BOARD THEN VOTES 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 PARENT PROJECT MUSCULAR DYSTROPHY CEO COMPENSATION REVIEW PROCESS THE PRESIDENT AND CEO IS THE PRINCIPAL REPRESENTATIVE OF THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH ("PPMD"), AND THE PERSON RESPONSIBLE FOR THE EFFICIENT OPERATION OF THE ORGANIZATION. THE ANNUAL PROCESS FOR DETERMINING HIS/HER COMPENSATION IS AS FOLLOWS: PPMD SHALL [EITHER THE FULL BOARD OR A COMPENSATION COMMITTEE/EXECUTIVE COMMITTEE] ANNUALLY EVALUATE THE PRESIDENT AND CEO ON HIS/HER PERFORMANCE, AND ASK FOR HIS/HER INPUT ON MATTERS OF PERFORMANCE AND COMPENSATION. BOARD APPROVAL. THE BOARD COMMITTEE WILL OBTAIN RESEARCH AND INFORMATION TO MAKE A RECOMMENDATION TO THE FULL BOARD FOR THE COMPENSATION (SALARY AND BENEFITS) OF THE PRESIDENT AND CEO BASED ON A REVIEW OF COMPARABILITY DATA. THIS DATA MAY INCLUDE THE FOLLOWING: - SALARY AND BENEFIT COMPENSATION STUDIES BY INDEPENDENT SOURCES; - WRITTEN JOB OFFERS FOR POSITIONS AT SIMILAR ORGANIZATIONS; - DOCUMENTED TELEPHONE CALLS ABOUT SIMILAR POSITIONS AT BOTH NONPROFIT AND FOR-PROFIT ORGANIZATIONS; AND - INFORMATION OBTAINED FROM THE IRS FORM 990 FILINGS OF SIMILAR ORGANIZATIONS. FORM 990, PART VI, SECTION C, LINE 19 AVAILABLE UPON REQUEST. FORM 990, PART IX, LINE 11G CONSULTING EXPENSE: PROGRAM SERVICE EXPENSES 968,076. MANAGEMENT AND GENERAL EXPENSES 260,681. FUNDRAISING EXPENSES 25,713. TOTAL EXPENSES 1,254,470. FORM 990, PART XII, LINE 2C THE PROCESS HAS NOT CHANGED FROM PRIOR YEAR.