2024-07-24T14:37:48-05:00 2023-12-31 223604710 JAMES M WOOD CPA 603B OMNI DRIVE HILLSBOROUGH NJ 08844 990 2023-01-01 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 2024-07-17 1 PATRICIA FURLONG 999009999 0 JAMES M WOOD P00310420 9084311700 2024-07-17 X 2 AAL1 IAL1 2023 2023-04-26 12:10:37Z PATRICIA A FURLONG 1012 14TH STREET NW 500 WASHINGTON DC 20005 14961241 0 X WWW.PARENTPROJECTMD.ORG X 1997 OH END DUCHENNE MUSCULAR DYSTROPHY THROUGH RESEARCH, ADVOCACY, EDUCATION, & OPTIMAL MEDICAL CARE. 16 16 26 500 0 0 9959415 12660929 798475 1210969 41696 88569 -46572 -79382 10753014 13881085 2629658 2560127 0 0 3241316 3699580 0 0 552547 5166667 5852779 11037641 12112486 -284627 1768599 8648654 10440900 768416 634715 7880238 9806185 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 7116727 2560127 1262521 RESEARCHPPMD'S RESEARCH PROGRAM IDENTIFIES AND AGGRESSIVELY FUNDS THE MOST PROMISING NEAR AND LONG-TERM DUCHENNE RESEARCH ACROSS NUMEROUS THERAPEUTIC STRATEGIES; STIMULATES NEW RESEARCH TO ENSURE THAT THE THERAPEUTIC PIPELINE IS RICH WITH OPPORTUNITY; FACILITATES PRE-COMPETITIVE INDUSTRY INTERACTIONS THROUGH THE DUCHENNE DRUG DEVELOPMENT ROUNDTABLE TO ENHANCE AND HARMONIZE THE CLINICAL TRIAL LANDSCAPE; AND SUPPORTS MULTI-STAKEHOLDER DATA MODELING CONSORTIA TO ACCELERATE DRUG DEVELOPMENT TIMELINES. IN ADDITION TO SIGNIFICANT PRE-CLINICAL AND ACADEMIC RESEARCH FUNDING, THROUGH THE VENTURE PATHWAYS PROGRAM, PPMD MAKES INVESTMENTS IN EARLY-STAGE BIOPHARMACEUTICAL COMPANIES TO CATALYZE DEVELOPMENT OF NOVEL THERAPIES TO TREAT DUCHENNE AND BECKER. THE DUCHENNE REGISTRYTHE DUCHENNE REGISTRY IS A PATIENT-REPORTED REGISTRY FOR INDIVIDUALS WITH DUCHENNE AND BECKER MUSCULAR DYSTROPHY AND CARRIER FEMALES, ESTABLISHED BY PPMD IN 2007, THE REGISTRY WAS CREATED TO BRIDGE THE INFORMATION GAP BETWEEN CLINICIANS, RESEARCHERS, AND THE PATIENT COMMUNITY, THEREBY ADDRESSING MEDICAL CARE NEEDS AND ACCELERATING THE PACE OF THERAPEUTIC ADVANCEMENTS. OVER 5,000 FAMILIES ACROSS THE GLOBE HAVE EMBRACED THEIR ROLE AS CITIZEN SCIENTISTS AND HAVE CONTRIBUTED TO THE LARGEST PATIENT-REPORTED DATA SET FOR DUCHENNE.SINCE ITS LAUNCH, DATA HAS BEEN REFERENCED IN THIRTEEN PUBLICATIONS AND EXPORTED BY RESEARCHERS 65 TIMES. THE REGISTRY HAS ALSO BEEN USED TO IDENTIFY AND CONNECT PEOPLE WITH DUCHENNE TO OVER 80 ACTIVELY RECRUITING TRIALS. THE DUCHENNE OUTCOMES RESEARCH INTERCHANGE (THE INTERCHANGE): THE INTERCHANGE COLLECTS PATIENT DATA AND CLINICIAN ENTERED DATA SO BOTH SETS ARE SO BOTH AGGREGATED AND ANALYZED IN ONE PLACE AND KEY INDUSTRY STAKEHOLDERS CAN GET A FULL PICTURE OF HOW DIFFERENT PEOPLE LIVE WITH DUCHENNE. THE ELECTRONIC HEALTH RECORD (EHR) STUDY: THE EHR STUDY EXTRACTS DATA FROM SEVERAL OF PPMD'S CERTIFIED DUCHENNE CARE CENTERS ACROSS THE COUNTRY TO IMPROVE CARE AND ANSWER RESEARCH QUESTIONS IN A WAY THAT DOES NOT REQUIRE EXTRA EFFORT FROM PATIENTS OR THEIR DOCTOR.THE REGISTRY IS ALSO HOME TO PPMD'S ELECTRONIC HEALTH RECORD (EHR) EXTRACTION STUDY WHICH RECEIVES CORE CLINICAL DATA ELEMENTS FROM SOME CARE CENTERS. CAREPPMD'S CARE PROGRAM STRIVES TO ENSURE THAT PEOPLE LIVING WITH DUCHENNE ARE LIVING LONGER, STRONGER LIVES, BY HELPING PROVIDE ACCESS TO EXPERT HEALTHCARE PROVIDERS, A COMPREHENSIVE TEAM OF SUB-SPECIALISTS, AND APPROVED TREATMENTS. PPMD IDENTIFIES GAPS IN CARE FOR PEOPLE WITH DUCHENNE THROUGHOUT THE LIFESPAN AND COLLABORATES WITH HEALTH CARE PROFESSIONALS ACROSS THE GLOBE TO IMPROVE HEALTH OUTCOMES FOR ALL DUCHENNE PATIENTS. PPMD'S CERTIFIED DUCHENNE CARE CENTER PROGRAM (CDCC) HELPS TO ENSURE THAT CENTERS COMPLY WITH THE STANDARDS OF CARE AND SERVICES THAT HAVE BEEN ESTABLISHED IN THE DUCHENNE CARE GUIDELINES. ALL CERTIFIED DUCHENNE CARE CENTERS HAVE MET THE REQUIREMENTS FOR, AND AGREE TO PROVIDE, STANDARDIZED CARE AND SERVICES. 1933388 EDUCATIONPPMD'S EDUCATION INITIATIVES INCREASE AWARENESS AND UNDERSTANDING OF THE DISEASE PROGRESSION AND THE COMPONENTS OF MULTIDISCIPLINARY COMPREHENSIVE CARE NECESSARY TO OPTIMIZE QUALITY AND QUANTITY OF LIFE THROUGHOUT THE LIFESPAN. PPMD PARTNERS WITH EXPERTS IN DUCHENNE TO DEVELOP UP-TO-DATE INFORMATIONAL RESOURCES REGARDING TREATMENT AND CARE THAT WE THEN SHARE BROADLY. PPMD COLLABORATES WITH NATIONAL AND INTERNATIONAL ORGANIZATIONS TO DEVELOP AND DISSEMINATE EDUCATIONAL RESOURCES APPROPRIATE FOR THE GLOBAL DUCHENNE COMMUNITY.ENGAGEMENT PPMD BRINGS PEOPLE TOGETHER FOR SUPPORT AND LEARNING OPPORTUNITIES AT ALL TIMES. PPMD HOSTS THE LARGEST GLOBAL DUCHENNE CONFERENCE EVERY SUMMER, BRINGING TOGETHER PATIENTS, FAMILIES, CLINICIANS, RESEARCHERS, AND INDUSTRY PARTNERS FROM ACROSS THE GLOBE TO SHARE THE LATEST NEWS AND UPDATES. PPMD ALSO CONVENES MEMBERS OF THE DUCHENNE COMMUNITY THROUGH DIFFERENT GROUP GATHERINGS - VIRTUALLY AND IN PERSON AT VARIOUS POINTS THROUGHOUT THE YEAR. CURRENT GROUPS INCLUDE DUCHENNE CARRIERS, DUCHENNE SIBLINGS, DUCHENNE DADS, DUCHENNE GRANDPARENTS AND NEWLY DIAGNOSED GROUPS. PPMD ALSO OFFERS 1:1 CONNECTION BASED ON SPECIFIC NEEDS THROUGH PPMD TOGETHER - VIRTUAL RESOURCE MEETINGS. 1137597 ADVOCACYPPMD'S ADVOCACY EFFORTS ARE FOCUSED ON ADVANCING CARE AND TREATMENTS FOR DUCHENNE BY LEVERAGING FEDERAL RESOURCES, BUILDING PARTNERSHIPS, AND ADVANCING REGULATORY PROCEDURES AND INFRASTRUCTURE. WE EMPOWER ADVOCATES WITH THE TOOLS AND INFORMATION TO ENGAGE WITH CONGRESSIONAL REPRESENTATIVES TO FOSTER DUCHENNE CHAMPIONS WITHIN CONGRESS AND TO SUPPORT LEGISLATION AND REGULATORY POLICIES, ENSURING THAT DUCHENNE PRIORITIES ARE REFLECTED ACROSS ALL GOVERNMENT AGENCIES.PPMD ALSO LEADS EFFORTS FOR FEDERAL AND LOCAL LEGISLATION TO SUPPORT NEWBORN SCREENING FOR DUCHENNE. 10187712 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 35 0 1 26 1 0 0 0 0 0 0 0 0 0 0 0 0 X 16 16 1 0 0 0 0 0 0 1 0 0 0 1 1 1 1 1 1 1 1 0 AL CA FL GA HI IL KS KY MA MD MI MN NC MS NH NJ NM NY OR PA RI SC TN VA WV X X THE ORGANIZATION 2012508440 1012 14TH STREET NW 500 WASHINGTON DC 20005 GRETCHEN EGNER BOARD CHAIRMAN 8.00 X X 0 0 0 ALPA KHUSHALANI VICE CHAIR 8.00 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 DAVID N HOFSTEIN EXECUTIVE COMMITTEE 6.00 X 0 0 0 JOHN KILLIAN EXECUTIVE COMMITTEE 6.00 X 0 0 0 RASHA ALNAIBARI DIRECTOR 2.00 X 0 0 0 SUE APKON DIRECTOR 2.00 X 0 0 0 JEFFREY BIGELOW DIRECTOR 2.00 X 0 0 0 TIMOTHY CRIPE DIRECTOR 2.00 X 0 0 0 ANESSA FEHSENFELD DIRECTOR 2.00 X 0 0 0 MICHELLE FURLONG DIRECTOR 2.00 X 0 0 0 LANCE HESTER DIRECTOR 2.00 X 0 0 0 RICHARD KLEIN DIRECTOR 2.00 X 0 0 0 COLIN RENSCH DIRECTOR 2.00 X 0 0 0 BETH WHITE DIRECTOR 2.00 X 0 0 0 PATRICIA A FURLONG PRESIDENT AND CEO 40.00 X 371400 0 15379 KAYLAN MOITOSO CHIEF BUSINESS OFFICER 40.00 X 256267 0 10431 ANN MARTIN VICE PRESIDENT, COMMUNITY RESEARCH & GENETIC SERVI 40.00 X 172800 0 22640 ERIC CAMINO VICE PRESIDENT, RESEARCH AND CLINICAL INNOVATION 40.00 X 159938 0 22180 NICOLE HERRING VICE PRESIDENT, DEVELOPMENT & COMMUNITY ENGAGEMENT 40.00 X 157850 0 34706 1118255 0 105336 13 0 1 0 SHERATON DALLAS 400 N OLIVE S DALLAS TX 75201 MEETING SERVICES/ AV & PRODUCTION 749842 INTERCONTINENTAL NEW YORK TIMES SQUARE 300 W 44TH ST NEW YORK NY 10036 MEETING SERVICES/ AV & PRODUCTION 580595 FAEGRE DRINKER BIDDIE & REATH LLP 75 REMITTANCE DRIVE CHICAGO IL 60675 CONSULTING SERVICES 297984 UNITED HEALTHCARE PO BOX 94017 PALATINE IL 60094 HEALTH INSURANCE 296295 PORTER WRIGHT MORRIS & ARTHUR LLP 41 SPITJ HIGH ST COLUMBUS OH 43215 LEGAL FEES 288073 14 2634182 10026747 12660929 FEES FOR SERVICE 900099 603458 603458 CONFERENCE INCOME 900099 587511 587511 OTHER MEETINGS AND CONFERENCES 900099 20000 20000 1210969 88182 88182 808245 807858 387 387 387 141751 2634182 272298 -130547 -130547 RECOVERY OF PREVIOUSLY AWARDED GR 900099 40823 40823 OTHER 900099 10342 10342 51165 13881085 1262521 0 -42365 2506357 2506357 53770 53770 371400 315690 18570 37140 2703536 2276227 161057 266252 134941 113742 7881 13318 272736 229900 15938 26898 216967 182881 12671 21415 491921 42187 449734 20800 20800 1134369 819004 294365 21000 52412 52370 42 47179 5577 41198 404 359665 82598 215204 61863 86706 67999 16429 2278 526739 501932 4464 20343 98359 98209 100 50 13774 11611 804 1359 21538 15875 3808 1855 ANNUAL CONFERENCE 959687 959687 0 0 PROGRAM SUPPLIES 696790 682761 13509 520 MEALS 575908 565886 7758 2264 CONTRIBUTIONS & SPONSOR 214346 213241 1105 0 552586 390208 86832 75546 12112486 10187712 1372227 552547 1694546 3303990 1500181 1500476 1782425 1565673 0 252548 87750 65513 197973 367666 111685 91324 26475 20361 138898 282716 2210501 2113362 850479 850479 159426 118116 8648654 10440900 463474 435449 62917 102502 242025 96764 768416 634715 X 6152121 7453058 1728117 2353127 7880238 9806185 8648654 10440900 1768599 157348 0 X X 0 1 X 1 0 X 11062420 8889998 9127402 9959415 12802680 51841915 11062420 8889998 9127402 9959415 12802680 51841915 18826179 33015736 883 203 49538 9584 88182 148390 329826 329826 52320131 3585074 0.63100 0.63040 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 30148 80000 110148 12002338 12112486 755624 188906 0 0 478942 542168 701882 755624 2478616 3717924 30000 50000 107134 110148 297282 119736 135542 175471 188906 619655 929483 12440 16400 27134 30148 86122 95666 77776 17890 16019 13548 2471 20361 REAL ESTATE INVESTMENT TRUST 137951 F U.S. TREASURY BONDS 1975411 F 2113362 AGREEMENT FOR FUTURE EQUITY 850479 C 850479 OPERATING LEASE LIABILITIES 96764 96764 14038433 157348 157348 13881085 0 13881085 12112486 0 12112486 0 12112486 0 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 0 0 GRANTS TO RECIPIENTS LOCATED IN REGION 53770 0 0 0 0 0 0 53770 0 53770 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS 50000 WIRE TRANSFER 0 0 0 1 0 0 0 SAM'S NIGHT 1081759 1081759 300 WALT DISNEY WORLD EVENT 249349 249349 75190 44 1444825 1303074 141751 196808 2775933 2634182 141751 272298 272298 -130547 1 ANALYSIS GROUP 111 HUNTINGTON AVE 14TH FLOOR BOSTON MA 02199 042727260 C CORPORATION 48333 0 RESEARCH- SUPPORT OF COLLECTIVE ANALYSIS TRAJECTORY PROJECT CHILDREN'S RESEARCH INSTITUTE 801 ROEDER ROAD SUITE 500 SILVER SPRING MD 20910 521654453 501(C)(3) 32740 0 CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS CINCINNATI CHILDREN'S HOSPITAL MLC 49003333 BURNET AVENUE CINCINNATI OH 45229 310833936 501(C)(3) 588811 0 RESEARCH - ACTION NETWORK GRANT, RESEARCH- SIBLING CASE REPORTS, CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS. CRITICAL PATH 1730 E RIVER ROAD SUITE 200 TUCSON AZ 85718 201991334 501(C)(3) 99601 0 RESEARCH- SUPPORT OF DUCHENNE REGULATORY SCIENCE CONSORTIUM EMMES ENDPOINT SOLUTIONS LLC 68 EVERGREEN STR STE 1 KINGSTON MA 02364 810761070 LLC 35000 0 RESEARCH- SUPPORT OF ARISE STUDY NATIONWIDE CHILDREN'S 700 CHILDRENS DR COLUMBUS OH 43205 316056230 501(C)(3) 60000 0 RESEARCH- MEETING SUPPORT NEW YORK UNIVERSITY ONE PARK AVE 5TH FLOOR NEW YORK NY 10016 135562308 501(C)(3) 100000 0 RESEARCH- PEDIATRIC GENE THERAPY MEDICAL ETHICS NORTHWESTERN UNIVERSITY ATTN ASRSP 633 CLARK ROOM G-547 EVANSTON IL 60208 362167817 501(C)(3) 110250 0 RESEARCH- WELLSTONE SUPPLEMENT OHIO STATE UNIVERSITY 1960 KENNY ROAD COLUMBUS OH 43210 316025986 STATE ENTITY 5890 0 RESEARCH- DIVERSITY EQUITY AND INCLUSION INTERVIEWS REALLY USEFUL ROBOTS 26 SHADY BROOK DR LANGHORNE PA 19047 844830485 LLC-P 54362 0 RESEARCH- ASSESSMENT OF EFFICACY AND MAINTENANCE OF PASSIVE EXOSKELETONS WITH MOTOR ACTUATION ASSIST FOR PATIENTS WITH DUCHENNE MUSCULAR DYSTROPHY REGENTS OF THE UNIVERSITY OF CALIFORNIA -LA 1125 MURPHY HALL 405 HILGARD LOS ANGELES CA 90095 956006143 501(C)(3) 310000 0 RESEARCH- DMD MOLECULAR AND CELLULAR DYNAMICS AT SINGLE NUCLEI RESOLUTION & WELLSTONE SUPPLEMENT RESEARCH FOUNDATION FOR SUNY (BINGHAMTON) GRANTS FINANCIAL MGM UNIVERSITY OF MISSOURI AR PO BOX 6000 BINGHAMTON NY 13902 141368361 501(C)(3) 75000 0 RESEARCH- TARGETING THE INNATE IMMUNE SYSTEM TO BLOCK ACUTE INFLAMMATORY AND CHRONIC IMMUNE RESPONSES TO TRANSGENE AND AAV VECTOR IN DMD-2021 TEAM JOSEPH 5745 W MAPLE RD STE 204 WEST BLOOMFIELD MI 48322 800613664 C CORPORATION 140000 0 CARE PROGRAM- EXCEPTIONAL NEEDS GRANT THE CHILDRENS HOSPITAL OF PHILADELPHIA 3401 CIVIC CENTER BLVD PHILADELPHIA PA 19104 231352166 C CORPORATION 7000 0 RESEARCH - SIBLING CASE REPORTS & EARLY EXON SKIPPING CASE REPORTS THE NEMOURS FOUNDATION 1600 ROCKLAND RD WILMINGTON DE 19803 590634433 501(C)(3) 80003 0 CARE PROGRAM- AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS THE REGENTS OF THE UNIVERSITY OF CALIFORNIA (UC BERKELEY) 2195 HEARST AVE RM 130 MC 1103 BERKELEY CA 94720 946002123 501(C)(3) 28843 0 RESEARCH- CHANGES IN MUSCLE MASS USING THE D3-CREATINE DILUTION METHOD AND FUNCTION IN DMD UNIVERSITY OF FLORIDA 219 GRINTER HALL PO BOX 115500 GAINESVILLE FL 32611 596002052 501(C)(3) 275765 0 RESEARCH- WELLSTONE SUPPLEMENT AND CLINICAL STUDY OF ANTI-AAV ANTIBODY DEPLETION UNIVERSITY OF FLORIDA FOUNDATION UF - MYOLOGY INSTITUTE 1200 NEWELL DRIVE ARB R5-234 PO BOX 100267 GAINESVILLE FL 32610 590974739 501(C)(3) 305346 0 RESEARCH- PRECLINICAL THERAPEUTIC ASSESSMENT LAB AND UF BIOREPOSITORY SUPPORT- LILLY, NCH, CATABASIS SAMPLES STORAGE UTAHPRIMARY CHILDREN'S EHR DEPT OF PEDIATRICS DIV OF NEUROLOGY 295 CHIPETA WAY SALT LAKE CITY UT 84158 876000525 501(C)(3) 25163 0 RESEARCH- DORI EHR PROGRAM VANDERBILT MEDICAL CENTER 1211 MEDICAL CENTER DR NASHVILLE TN 37232 352528741 501(C)(3) 55036 0 RESEARCH- CARDIAC YALE OFFICE OF SPONSORED PROJECTS PO BOX 1873 NEW HAVEN CT 06508 060646973 501(C)(3) 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 345000 0 26400 0 0 0 14664 0 715 0 386779 0 0 0 KAYLAN MOITOSO CHIEF BUSINESS OFFICER 236667 0 19600 0 0 0 10302 0 129 0 266698 0 0 0 ANN MARTIN VICE PRESIDENT, COMMUNITY RESEARCH & 160000 0 12800 0 0 0 8686 0 13954 0 195440 0 0 0 NICOLE HERRING VICE PRESIDENT, DEVELOPMENT & COMMUN 146000 0 11680 0 170 0 7921 0 26785 0 192556 0 0 0 ERIC CAMINO VICE PRESIDENT, RESEARCH AND CLINICA 148000 0 11840 0 98 0 8028 0 14152 0 182118 0 0 0 X 6 707196 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 XII, LINE 2C THE PROCESS HAS NOT CHANGED FROM PRIOR YEAR.