2024-02-14T11:15:47-06:00 2023-06-30 541498950 RENNER AND COMPANY CPA PC 700 NORTH FAIRFAX STREET SUITE 400 ALEXANDRIA VA 22314 990 2022-07-01 237076021 OSTEOGENESIS IMPERFECTA FOUNDATION OSTE 3019470083 656 QUINCE ORCHARD ROAD 650 GAITHERSBURG MD 20878 TRACY SMITH HART CHIEF EXECUTIVE OFFICER 3019470083 2024-02-14 1 TRACY SMITH HART 999009999 1 ANDREW E YOUNG CPA P01203950 7035351200 2024-02-14 2 AAL1 IAL1 2022 2023-04-26 12:10:37Z TRACY SMITH HART 656 QUINCE ORCHARD ROAD 650 GAITHERSBURG MD 20878 2362035 0 X WWW.OIF.ORG X 1970 GA OSTEOGENESIS IMPERFECTA FOUNDATION, INC. (THE FOUNDATION OR OIF) IS A GEORGIA NON-STOCK CORPORATION INCORPORATED IN 1970 WITH THE PRIMARY PURPOSE OF IMPROVING THE QUALITY OF LIFE FOR PEOPLE AFFECTED BY THE BONE DISORDER OSTEOGENESIS IMPERFECTA (OI) THROUGH RESEARCH INTO TREATMENTS AND A CURE, EDUCATION, AWARENESS, AND MUTUAL SUPPORT. THE FOUNDATION'S HEADQUARTERS ARE LOCATED IN GAITHERSBURG, MARYLAND. 15 15 13 100 0 0 1961638 2159567 0 0 234313 50847 -83890 4098 2112061 2214512 695763 399037 0 0 1083803 1131740 0 0 90889 508382 554521 2287948 2085298 -175887 129214 2054090 2346165 574781 670918 1479309 1675247 X OUR MISSION IS TO IMPROVE THE QUALITY OF LIFE FOR PEOPLE AFFECTED BY OI THROUGH RESEARCH TO FIND TREATMENTS AND A CURE, EDUCATION, AWARENESS, AND MUTUAL SUPPORT. THERE ARE AT LEAST FOUR DISTINCT FORMS OF OSTEOGENESIS IMPERFECTA REPRESENTING EXTREME VARIATIONS IN SEVERITY AND AFFECTING 20,000 TO 40,000 PEOPLE IN THE UNITED STATES. 0 0 606591 281386 RESEARCH:THE FOUNDATION FUNDS GRANTS TO SUPPORT RESEARCH RELEVANT TO UNDERSTANDING AND TREATING OI. THROUGH THE MICHAEL GEISMAN FELLOWSHIP PROGRAM, OIF'S YOUNG INVESTIGATOR GRANT PROGRAM NAMED FRO THE SON OF OIF'S FOUNDER, GEMMA GEISMAN, FELLOWSHIPS ARE AWARDED TO POST-DOCTORAL TRAINEES WORKING ON PROJECTS WITH CLEAR RELEVANCE TO OI. THIS PAST YEAR, OIF AWARDED FIRST YEAR FUNDING TO DR. GIULIA MONTAGNA.NIH BRITTLE BONE DISORDERS CONSORTIUM (BBDC) - THE BBDC HAS BEEN FUNDED FOR AN ADDITIONAL FIVE YEARS AS PART OF THE NATIONAL INSTITUTES OF HEALTH'S RARE DISEASES CLINICAL RESEARCH NETWORK. THE GOAL OF THE INITIATIVE IS TO BETTER UNDERSTAND ALL GENETIC FORMS OF OI, EXPAND TREATMENT OPTIONS AND TRAIN THE NEXT GENERATION OF PHYSICIANS AND SCIENTISTS TO STUDY OI. AS THE LEAD PATIENT ADVOCACY ORGANIZATION PARTNER, THE OIF WILL EXPAND ON THE OUTREACH TO MEDICAL PROFESSIONALS AND CONSTITUENTS THROUGH THE VARIOUS ONLINE LEARNING PORTALS HOUSED ON THE OIF'S WEBSITE AS WELL AS CONTINUE TO PROVIDE OPPORTUNITIES FOR SCIENTISTS AND OI RESEARCHERS TO CONNECT AND COLLABORATE.EUGENE WASHINGTON PCORI ENGAGEMENT AWARD - DURING 2022, THE OIF RECEIVED AWARDS THROUGH THE EUGENE WASHINGTON PCORI ENGAGEMENT AWARDS PROGRAM, AN INITIATIVE OF THE PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE (PCORI). PCORI IS AN INDEPENDENT, NONPROFIT ORGANIZATION AUTHORIZED BY CONGRESS TO FUND COMPARATIVE EFFECTIVENESS RESEARCH THAT WILL PROVIDE PATIENTS, THEIR CAREGIVERS, AND CLINICIANS WITH THE EVIDENCE NEEDED TO MAKE BETTER-INFORMED HEALTH AND HEALTHCARE DECISIONS THE GOAL OF PATIENT-CENTERED OUTCOMES RESEARCH (PCOR) FOR OI IS TO PROVIDE DOCTORS AND CARE PROVIDERS WITH INFORMATION THAT IS RELEVANT TO THE NEEDS OF THE OI COMMUNITY. THIS ALLOWS CLINICIANS TO PROVIDE BETTER CARE AND EMPOWERS THE OI COMMUNITY TO ADVOCATE FOR THEMSELVES. UNTIL RECENTLY, OI RESEARCH HAS BEEN FOCUSED ON FRACTURES, BUT THE CHARACTERISTICS OF OI GO BEYOND BONE AND INCLUDES EAR, LUNGS, EYE, AND HEART PROBLEMS. PCOR FILLED THIS GAP IN, ADDRESSING THE NEEDS OF THE OI COMMUNITY THAT HAVE PREVIOUSLY GONE UNHEARD.RARE BONE DISORDER ECHO CLINIC - THE OIF AND THE RARE BONE DISEASE ALLIANCE HAVE CONTINUED TO EXPAND ON THE RARE BONE DISEASE TELEECHO CLINIC SERIES AND OI TELEECHO SERIES. THE GOAL OF THIS EDUCATIONAL PROGRAM, A PARTNERSHIP WITH PROJECT ECHO (EXTENSION FOR COMMUNITY HEALTHCARE OUTCOMES), IS TO BUILD CAPACITY TO DIAGNOSE AND TREAT RARE BONE DISEASES AND DISORDERS SAFELY AND EFFECTIVELY. BOTH THE RARE BONE DISEASE TELEECHO CLINIC SERIES AND OI TELEECHO SERIES USE ZOOM VIDEOCONFERENCING. THE RARE BONE DISEASE TELEECHO SERIES IS PRESENTED ON THE FIRST THURSDAY OF EVERY MONTH AND IS IN ITS 5TH YEAR WHILE THE OI TELEECHO SERIES IS BEGINNING ITS SECOND SERIES OF PROGRAMMING WITH SESSIONS ON THE 2ND WEDNESDAY OR EVERY OTHER MONTH. IN EACH SESSION, FACULTY MEMBERS OR GUEST SPEAKERS PRESENT A BRIEF DIDACTIC PRESENTATION, FOLLOWED BY PARTICIPANT-LED CASE PRESENTATIONS AND GROUP DISCUSSION OF THE PRESENTED CASES. THE MAIN PRESENTATIONS ARE RECORDED AND POSTED ONLINE THROUGH THE OIF WEBSITE AND YOUTUBE. AMA PRE CATEGORY 1 CME CREDITS ARE AVAILABLE FOR PARTICIPANTS FREE OF CHARGE. FOR THE RARE BONE DISEASE TELEECHO CLINIC SERIES, FOUR PRESENTATIONS HAVE BEEN COMPLETED IN ITS FIFTH-YEAR CURRICULUM, WITH PRESENTATIONS SCHEDULED MONTHLY THROUGH JULY. THE PROGRAM FACULTY WILL MEET IN THE SUMMER OF 2024 TO BEGIN PLANNING NEXT YEAR'S SCHEDULE, WHICH WILL BEGIN IN AUGUST 2024. ALL SESSIONS FROM THE CURRENT AND PAST YEARS ARE AVAILABLE FOR REVIEW ONLINE AND ON THE OIF'S YOUTUBE CHANNEL. THE PROGRAM HAS ATTRACTED 3,993 ATTENDEES OVERALL, WITH AN AVERAGE OF 95 PER SESSION OVER THE PROGRAM'S EXISTENCE. THE RECORDED TALKS ON YOUTUBE HAVE MORE THAN 36,000 VIEWS. THE FACULTY CHAIR FOR THIS SERIES IS DR. LAURA TOSI, BBDC PI AT THE CHILDREN'S NATIONAL HOSPITAL SITE IN WASHINGTON, D.C. THE OI TELEECHO CLINIC SERIES COMPLETED ITS FIRST YEAR BETWEEN SEPTEMBER 2021 AND AUGUST 2022, AND WILL BEGIN THE 2ND SERIES OF PROGRAMMING ON DECEMBER 13, 2023. THE FIRST YEAR HAD 693 ATTENDEES IN TOTAL, AN AVERAGE OF 58 ATTENDEES PER SESSION, AND REACHED 257 UNIQUE MEDICAL PROFESSIONALS. THE TOTAL VIEWS ON YOUTUBE FOR THE OI TELEECHO SERIES ARE NOW OVER 4,500. THE ORGANIZING FACULTY FOR THIS SERIES INCLUDES DR. FRANK RAUCH, DR. SANDESH NAGAMANI, BOTH LEAD INVESTIGATORS OF THE BBDC, AS WELL AS DR. JEANNE FRANZONE FROM THE BBDC SITE AT NEMOURS/ALFRED I. DUPONT HOSPITAL FOR CHILDREN IN DELAWARE. THE 12 FUTURE TOPICS AIM TO HIGHLIGHT RESEARCH INITIATIVES OF THE BBDC AND THE OI COMMUNITY, INCLUDING ADULT HEALTH TREATMENTS, PAIN MANAGEMENT, AND MORE. OI REGISTRY - THE OIF ENCOURAGES OI COMMUNITY MEMBERS (18 AND OLDER) AND PARENTS OF CHILDREN WITH OI TO JOIN THE OI REGISTRY. THE OI REGISTRY IS A DATABASE OF INDIVIDUALS WITH OI WHO ARE INTERESTED IN PARTICIPATING IN OI RESEARCH.PATIENT-CENTERED OUTCOMES RESEARCH - THE OIF WAS APPROVED FOR A FUNDING AWARD THROUGH THE EUGENE WASHINGTON PCORI ENGAGEMENT AWARDS (ENGAGEMENT AWARDS) PROGRAM, AN INITIATIVE OF THE PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE (PCORI). FUNDING FROM THE PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE (PCORI) WILL BE USED TO ENHANCE AND EXPAND THE ONGOING WORK OF THE OI FOUNDATION (OIF). THIS PROJECT WAS COMPLETED ON OCTOBER 31, 2023.THE OIF INFORMATION CENTER IS A WEB-BASED RESOURCE FOR MEDICAL PROFESSIONALS AND PATIENTS THAT HOUSES EXTENSIVE OI-RELATED EDUCATIONAL MATERIAL FROM FACTSHEETS, VIRTUAL LEARNING VIDEO LIBRARY, PUBLICATIONS, AND CLINIC AND PROVIDER DIRECTORIES. THE OIF INFORMATION CENTER RECEIVES ABOUT 15,000 VISITS EACH YEAR. ADDITIONALLY, THE OIF RESPONDS TO MORE THAN 11,000 PHONE AND EMAIL REQUESTS FOR INFORMATION EACH. MORE THAN 1,800 MEDICAL PROFESSIONALS HAVE SIGNED UP TO RECEIVE THE OIF'S MONTHLY PROFESSIONAL EDUCATION NEWSLETTER. OIF INITIATED THE NEW DIAGNOSIS TOOLKIT WHICH MET A TREMENDOUS NEED FOR THE OI COMMUNITY AND HELP PHYSICIANS WITH LIMITED EXPERIENCE TREATING OI. THE NEW DIAGNOSIS TOOLKIT, HAS RECEIVED 15,000 VIEWS. THE TOOLKIT PROVIDES MEDICALLY VERIFIED INFORMATION FOR FAMILIES AND PROVIDERS ON TOPICS RELATED TO THE CARE OF OI NEWBORNS FROM PREGNANCY THROUGH LIFE AT HOME AND HAS BEEN EXCEEDINGLY POPULAR WITH PATIENTS AND MEDICAL PROFESSIONALS. THE OIF HAS ALSO PRODUCED A VIDEO COMPANION PIECE AVAILABLE IN SPANISH AND FRENCH. IN 2023, THE OIF DEVELOPED THE ADULT HEALTH TOOLKIT, TO HELP ADULTS AND THEIR PROVIDERS UNDERSTAND AND TREAT THE HEALTH NEEDS OF ADULTS LIVING WITH OI, INCLUDING NAVIGATING THE TRANSITION FROM PEDIATRIC TO ADULT CARE.SCIENTIFIC MEETINGS OIF HOSTS AN ANNUAL SCIENTIFIC MEETING TO BRING TOGETHER LEADERS IN CLINICAL AND BASIC RESEARCH ON A SINGLE TOPIC RELATED TO OI. IN ADDITION, THE FOUNDATION PARTICIPATES IN NUMEROUS RESEARCH MEETINGS SPONSORED BY OTHER ORGANIZATIONS, INCLUDING THE NATIONAL INSTITUTE OF HEALTH (NIH). EVERY THIRD YEAR, OIF JOINS OTHER OI ASSOCIATIONS AT THE INTERNATIONAL SCIENTIFIC CONGRESS ON OI. NEW IN 2020, THE OIF HAS SUCCESSFULLY HOSTED BIANNUAL VIRTUAL AND IN-PERSON OI CLINIC AND BONE HEALTH TOWN HALL MEETINGS. THE MEETINGS GATHER MORE BETWEEN 100-200 ATTENDEES AND PROVIDE AN OPPORTUNITY FOR MEDICAL PROFESSIONALS WHO ARE TREATING PATIENTS WITH OI, AND THOSE WHO ARE INTERESTED IN BONE HEALTH, TO COME TOGETHER TO LEARN ABOUT OIF RESOURCES AND CONNECT AND COLLABORATE WITH EACH OTHER. THE OIF SUCCESSFULLY CO-CHAIRED A RARE BONE DISEASE ALLIANCE MEETING IN OCTOBER 2023 WHICH WAS HELD AS A PRE-MEETING TO THE AMERICAN SOCIETY OF BONE AND MINERAL RESEARCH ANNUAL MEETING IN VANCOUVER, BC. RARE BONE DISEASE ALLIANCE STEERING COMMITTEE CHAIR, DR. ERIC RUSH, WORKED CLOSELY WITH ASBMR TO GATHER A PROGRAM STEERING COMMITTEE INCLUDING DR. MICHAEL COLLINS, DR. MAEGEN WALLACE, DR. KATHRYN DAHIR AND DR. LEANNE WARD. THE MEETING WAS ATTENDED BY ABOUT 350 PHYSICIANS AND RESEARCHERS IN RARE BONE DISEASE. ASBMR AND THE RBDA HAVE FORMED A PARTNERSHIP TO HOST SIMILAR RARE BONE DISEASE PRE-MEETINGS OVER THE NEXT THREE YEARS.OI ADULT HEALTH INITIATIVE - THE OIF FUNDS THE CARDIOPULMONARY GRANT THROUGH FY2022. THE PROJECT WILL UNDERGO A THOROUGH REVIEW OF ACCOMPLISHMENTS IN FY2023. THIS COMMUNITY-DIRECTED SCIENTIFIC COMMITTEE LED STUDIES IN DIRECT RESPONSE TO THE GROWING CONCERN OF PULMONARY COMPLICATIONS, ESPECIALLY IN ADULTS, OF THOSE IN THE OI COMMUNITY. THE COMMITTEE WILL WORK TO DETERMINE THE INHERENT CAUSE OF RESTRICTIVE PHYSIOLOGY (CARDIOPULMONARY INSUFFICIENCY) IN PEOPLE WITH OI SO THAT TREATMENTS CAN BE RECOMMENDED AND APPROPRIATE MEASUREMENTS FOR AN ACCURATE ASSESSMENT OF THE RESTRICTIVE PHYSIOLOGY IN OI PATIENTS CAN BE DEFINED BY CREATING A STANDARD NORMATIVE REFERENCE FOR EACH OI TYPE. THE OIF CONTINUES TO TAKE THE LEAD IN DEVELOPING PROGRAMS THAT PROVIDE OPPORTUNITIES FOR SCIENTIFIC COLLABORATION, MUTUAL SUPPORT FOR PERSONS LIVING WITH OI, AND ACCESS TO THE MOST UP-TO-DATE AND MEDICALLY VERIFIED INFORMATION ABOUT OI. IN 2024 THE OIF WILL LAUNCH A NEW RARE BONE DISEASE ALLIANCE. 702453 117479 EDUCATION AND SUPPORT: THE OIF STRIVES TO BUILD PUBLIC AWARENESS AND GENERATE ADDITIONAL SUPPORT AMONG PEOPLE WITH OI, COMMUNITY ORGANIZATIONS, GOVERNMENT AGENCIES, THE PUBLIC, SCHOOL PERSONNEL AND MEDICAL PROFESSIONALS. THE FOUNDATION HAS A PUBLIC SERVICE ANNOUNCEMENT, PARTNERS WITH RELATED ORGANIZATIONS SUCH AS THE NATIONAL ORGANIZATION FOR RARE DISORDERS, THE NATIONAL BONE HEALTH ALLIANCE, THE RARE DISEASE PATIENT NETWORK, THE NATIONAL HEALTH COUNCIL, COMMITTEES/COUNCILS OF THE NATIONAL INSTITUTES OF HEALTH, AND THE OI FEDERATION OF EUROPE. IN ADDITION, OIF PARTICIPATES IN RARE DISEASE DAY ACTIVITIES AND SPONSORS OI AWARENESS WEEK EACH MAY.THE FOUNDATION OFFERS MEDICALLY VERIFIED INFORMATION RELATED TO OI. TOPICS INCLUDE MEDICAL ISSUES SUCH AS GENETICS, DIAGNOSIS AND TREATMENTS. ADDITIONAL TOPICS FOCUS ON DAILY LIVING STRATEGIES, SCHOOL AND EMPLOYMENT. THE FOUNDATION'S STAFF REPLIES TO REQUESTS FOR INFORMATION VIA PHONE, INTERNET, SOCIAL MEDIA AND MAIL. EDUCATIONAL MATERIALS ARE AVAILABLE IN PRINT AND ELECTRONICALLY THROUGH THE OIF WEBSITE. PRINT MATERIALS INCLUDE BOOKS, BROCHURES, FACT SHEETS AND A PRINTED NEWSLETTER. ELECTRONIC MATERIALS INCLUDE A MONTHLY EMAIL NEWSLETTER, AND VIA THE WEBSITE, FACT SHEETS, BOOKLETS AND BROCHURES. INFORMATION ON OI IS WRITTEN FOR A VARIETY OF AUDIENCES INCLUDING MEDICAL PROFESSIONALS, PARENTS AND OTHER FAMILY MEMBERS, CHILDREN, ADULTS WHO HAVE OI, AND SCHOOL PROFESSIONALS. THE OI FOUNDATION RESPONDS TO MORE THAN 11,000 DIRECT INQUIRIES A YEAR. THE OIF SUPPORT GROUP PROGRAM WILL BE DIVIDED INTO FIVE REGIONAL SUPPORT GROUPS AND AFFINITY SUPPORT GROUPS. THE REGIONAL SUPPORT GROUPS WILL BE THE FIRST TO LAUNCH, FOLLOWED LATER BY THE AFFINITY SUPPORT GROUPS. THE OIF HAS SELECTED REGIONAL SUPPORT GROUP LEADERS. WORKING WITH AN ADULT EDUCATION PROFESSIONAL, WE ARE DEVELOPING A TRAINING PROGRAM FOR SUPPORT GROUP LEADERS TO PROVIDE THEM WITH INFORMATION ABOUT OI, OIF PROGRAMS AND RESOURCES, AND SUPPORT IN HOSTING VIRTUAL EVENTS. THE OIF WILL HOST TWO VIRTUAL ORIENTATIONS AND AN IN-PERSON MEETING FOR SUPPORT GROUP LEADERS/CONTACTS AT OIF NATIONAL CONFERENCES.JEANIE COLEMAN IMPACT GRANT PROGRAM IN PARTNERSHIP WITH CHILDREN'S BRITTLE BONE FOUNDATION (CBBF), THIS ANNUAL COMPETITIVE GRANT PROGRAM WAS DESIGNED AND ESTABLISHED TO PROVIDE FUNDING FOR ITEMS THAT WILL SIGNIFICANTLY IMPROVE THE QUALITY OF LIFE FOR A PERSON WHO HAS OI AND WHO HAS LIMITED FINANCIAL RESOURCES. THIS PAST YEAR, THE FOUNDATION WAS ABLE TO FINANCE 11 APPLICANTS FOR FUNDING FOR A TOTAL OF $154,550. ITEMS AND SERVICES FUNDED THIS YEAR INCLUDE; ACCESSIBLE VANS, A THERAPEUTIC SWIM SPA, A WHEELCHAIR LIFT, MED SLEDS, AND GLASSES. 176641 172 OIF CONFERENCES: THE FOUNDATION'S PRINCIPAL EDUCATIONAL EVENT IS THE BIENNIAL OIF NATIONAL CONFERENCE. THE CONFERENCE BRINGS TOGETHER ADULTS WHO HAVE OI, PARENTS, FAMILY MEMBERS AND LEADING MEDICAL EXPERTS. THE CONFERENCE PROVIDES THE OPPORTUNITY FOR ATTENDEES TO HAVE FACE-TO-FACE MEETINGS WITH EXPERIENCED PHYSICIANS, LEARN ABOUT THE LATEST RESEARCH, AND INTERACT WITH OTHER PEOPLE WHO ARE AFFECTED BY OI.IN JULY 2020, THE FOUNDATION HELD ITS FIRST-EVER OIF VIRTUAL CONFERENCE. MORE THAN 800 OI COMMUNITY MEMBERS REGISTERED FOR THE VIRTUAL EVENT AND JOINED OI EXPERTS AND FELLOW COMMUNITY MEMBERS FOR TWO DAYS OF VIRTUAL INFORMATION AND SOCIAL SESSIONS. THE VIRTUAL CONFERENCE BEGAN WITH OIF'S FIRST-EVER VIRTUAL NATIONAL WALK-N-WHEEL FOR OI. SINCE ITS LAUNCH IN 2015, OIF'S REGIONAL CONFERENCE PROGRAM HAS REACHED MORE THAN 1,100 MEMBERS OF THE OI COMMUNITY, HALF OF WHOM HAD NEVER ATTENDED AN OI EVENT BEFORE. THESE ONE-DAY CONFERENCES FEATURE EDUCATIONAL SESSIONS LED BY OI EXPERTS INCLUDING OIF MEDICAL ADVISORY COUNCIL MEMBERS. 142054 37444 PUBLIC AWARENESS:THE OIF STRIVES TO BUILD PUBLIC AWARENESS AND GENERATE ADDITIONAL SUPPORT AMONG PEOPLE WITH OI, COMMUNITY ORGANIZATIONS, GOVERNMENT AGENCIES, THE PUBLIC, SCHOOL PERSONNEL AND MEDICAL PROFESSIONALS. THE FOUNDATION HAS A PUBLIC SERVICE ANNOUNCEMENT, PARTNERS WITH RELATED ORGANIZATIONS SUCH AS THE U.S. BONE & JOINT DECADE, THE NATIONAL ORGANIZATION FOR RARE DISORDERS, THE NATIONAL BONE HEALTH ALLIANCE, THE RARE DISEASE PATIENT NETWORK, THE NATIONAL HEALTH COUNCIL, COMMITTEES/COUNCILS OF THE NATIONAL INSTITUTES OF HEALTH, AND THE OI FEDERATION OF EUROPE. IN ADDITION, OIF PARTICIPATES IN RARE DISEASE DAY ACTIVITIES, AND SPONSORS OI AWARENESS WEEK EACH MAY. THE OI FOUNDATION MANAGES THREE OFFICIAL SOCIAL NETWORKING SITES: THE OIF FACEBOOK PAGE FOLLOWED BY 14,417 FACEBOOK USERS; THE OI FOUNDATION TWITTER PAGE (@OIFOUNDATION) - FOLLOWED BY 2,764 TWITTER USERS, AND THE OIF INSTAGRAM PAGE (@OIFOUNDATION) - FOLLOWED BY 2,098 INSTAGRAM USERS.THE OI FORUM PAGE, A FACEBOOK GROUP WITH 12,390 MEMBERS, IS FOR OI COMMUNITY MEMBERS TO ASK QUESTIONS, SHARE INFORMATION AND EXPERIENCES, AND CONNECT WITH OTHER OI COMMUNITY MEMBERS. THE FOUNDATION IS COMMITTED TO ADVOCATING ON BEHALF OF PEOPLE WITH OI. THE OIF HAS ESTABLISHED AN ADVOCACY INITIATIVE; A GRASSROOTS EFFORT FOCUSING ON EDUCATING LEGISLATORS AND THEIR STAFF ABOUT OI AND THE PRIORITIES OF THE FOUNDATION. 142054 37444 1627739 1 1 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 0 0 0 1 1 0 0 1 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 4 0 13 1 0 0 0 0 0 0 0 0 0 0 0 0 X 15 15 0 0 0 0 1 0 0 1 1 0 0 0 1 1 1 1 1 1 1 0 AK AR CA CO CT DC FL GA IL KS KY ME MD MA MI MN MS NH NJ NM NY NC OH OK OR PA RI SC TN UT VT VA WA WV WI X X THE ORGANIZATION 3019470083 656 QUINCE ORCHARD ROAD 650 GAITHERSBURG MD 20878 TED TRAHAN PRESIDENT 2.00 X X 0 0 0 JAMES M EARLY VICE PRESIDENT 2.00 X X 0 0 0 CHRISTINE WYMAN ROSSI VICE PRESIDENT 2.00 X X 0 0 0 SHARON MUTNICK TREASURER 2.00 X X 0 0 0 KENNETH FINKEL SECRETARY 2.00 X X 0 0 0 FRANCIS GLORIEUX MEDICAL ADVISOR COUNCIL CHAIR 2.00 X X 0 0 0 KAREN BRAITMAYER BOARD MEMBER 2.00 X 0 0 0 MICHELLE FYNAN BOARD MEMBER 2.00 X 0 0 0 BILLY HUANG BOARD MEMBER 2.00 X 0 0 0 TRACY L MULROY BOARD MEMBER 2.00 X 0 0 0 WENDY E SACKS BOARD MEMBER 2.00 X 0 0 0 JAMES SHARPLES BOARD MEMBER 2.00 X 0 0 0 MICHAEL SHERIDAN BOARD MEMBER 2.00 X 0 0 0 V REID SUTTON MD BOARD MEMBER 2.00 X 0 0 0 S JACINTA WHYTE BOARD MEMBER 2.00 X 0 0 0 TRACY SMITH HART CHIEF EXECUTIVE OFFICER 40.00 X 194513 0 26900 KATHERINE E CARTER CHIEF PROGRAM OFFICER 40.00 X 123543 0 6287 318056 0 33187 2 0 1 0 0 1339 18147 332022 670141 1137918 2159567 36689 36689 43972 29814 14158 14158 14158 84171 332022 117517 -33346 -33346 741 192 549 549 MISCELLANEOUS INCOME 900099 36895 36895 36895 2214512 37444 0 17501 292757 292757 106280 106280 235937 175243 38359 22335 734890 525249 169600 40041 9540 6512 2945 83 85837 61655 19070 5112 65536 47247 14136 4153 16700 16700 10698 10698 6595 4905 1268 422 19061 14238 3591 1232 32929 7270 25030 629 56522 42775 10045 3702 47341 35827 8413 3101 244182 236657 7525 1714 1714 10590 8015 1881 694 8893 5109 927 2857 PRINTING & DUPLICATING 22108 16731 3929 1448 BANK FEES 20196 18779 1417 POSTAGE & DELIVERY 14892 11268 2649 975 LICENSES AND PERMITS 12941 9793 2300 848 29159 20208 7111 1840 2085298 1627739 366670 90889 483443 153116 46284 10398 135440 444565 5122 12500 7795 7602 33360 35704 53927 47939 7360 5988 1292495 1501581 15886 8182 26905 166529 2054090 2346165 85832 145717 353565 304013 96491 44094 25000 25000 13893 152094 574781 670918 X 491742 -586 987567 1675833 1479309 1675247 2054090 2346165 129214 66724 0 X X 0 1 X 1 0 X 1659233 1514210 1862472 1961638 2159567 9157120 3187 116388 56772 927 741 178015 204250 204250 1866670 1630598 1919244 1962565 2160308 9539385 269901 299632 159024 331761 144210 1204528 127213 269024 218142 740280 483570 1838229 397114 568656 377166 1072041 627780 3042757 6496628 42952 43646 32461 34807 36689 190555 42952 43646 32461 34807 36689 190555 34981 36895 71876 1909622 1674244 1951705 2032353 2233892 9801816 0.66280 0.68450 0.01940 0.02100 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 987567 1378122 689856 1675833 1354619 726549 1093601 987567 1055103 623072 323556 1354619 713808 523273 181978 1055103 1044254 448070 778516 713808 1.00000 0 0 48961 42973 5988 4966 4966 0 5988 BENEFICIAL INTEREST IN ASSETS HELD IN PERPETUAL TRUST 15500 DEPOSITS 11405 RIGHT-OF-USE ASSET - OPERATING 139624 166529 OPERATING LEASE LIABILITY 152094 152094 X 2422021 66724 33966 100690 2321331 10698 -117517 -106819 2214512 2226083 33966 33966 2192117 10698 -117517 -106819 2085298 PART V, LINE 4: THE FOUNDATION'S ENDOWMENT FUNDS CONSIST OF RESTRICTED FUNDS DESIGNATED FOR A SPECIFIC PURPOSE BY A DONOR. PART X, LINE 2: IN ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES, ACCOUNTING STANDARDS REQUIRE AN ENTITY TO RECOGNIZE THE FINANCIAL STATEMENT IMPACT OF A TAX POSITION WHEN IT IS MORE-LIKELY-THAN-NOT THAT THE POSITION WILL NOT BE SUSTAINED UPON EXAMINATION. MANAGEMENT EVALUATED THE FOUNDATION'S TAX POSITIONS AND CONCLUDED THERE ARE NO UNCERTAIN TAX POSITIONS THAT REQUIRE ADJUSTMENT TO THE FINANCIAL STATEMENTS TO COMPLY WITH THE PROVISIONS OF THIS GUIDANCE. PART XI, LINE 4B - OTHER ADJUSTMENTS: RECLASSIFICATION OF EVENT EXPENSES -117,517. PART XII, LINE 4B - OTHER ADJUSTMENTS: RECLASSIFICATION OF EVENT EXPENSES -117,517. 0 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 0 0 RESEARCH GRANT BRITTLE BONE DISORDERS CONSORTIUM RESEARCH GRANT 45000 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 0 0 RESEARCH GRANT BRITTLE BONE DISORDERS CONSORTIUM RESEARCH GRANT 50000 0 0 0 0 0 0 95000 0 95000 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES RESEARCH GRANT 45000 BANK TRANSFER 0 N/A N/A NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES FELLOWSHIP GRANT 50000 BANK TRANSFER 0 N/A N/A 2 0 0 0 0 0 0 0 PART I, LINE 2: OIF MONITORS THE USE OF GRANT FUNDS OUTSIDE THE US BY REQUESTING PERIODIC ACTIVITY AND FINANCIAL REPORTS FROM ITS GRANTEES, AND WILL VISIT PROGRAM SITES (STAFF, PARTNERS OR BOARD MEMBERS) PERIODICALLY TO REVIEW AND INSURE GRANT OBJECTIVES ARE ON TRACK. PART III ACCOUNTING METHOD: STRONG BONES HOUSTON 105680 86950 18730 339 0 25121 0 2500 2172 FINE WINES NAPLES 89191 75316 13875 0 0 0 9040 600 1894 15 221322 169756 51566 0 2744 57811 15296 416193 332022 84171 339 2744 82932 9040 3100 19362 117517 -33346 0 BAYLOR COLLEGE OF MEDICINE ONE BAYLOR PLAZA MS BCM206 HOUSTON TX 77030 741613878 501(C)(3) 50000 0 N/A N/A RESEARCH GRANT UNIVERSITY OF CALIFORNIA - LOS ANGELES 405 HILGARD AVENUE LOS ANGELES CA 90095 956006143 501(C)(3) 50000 0 N/A N/A RESEARCH GRANT UNIVERSITY OF SOUTH FLORIDA 3650 SPECTRUM BLVD TAMPA FL 33612 593102112 501(C)(3) 69940 0 N/A N/A CONTACT REGISTRY PHOENIX CHILDREN'S HOSPITAL FOUNDATION 2929 CAMELBACK ROAD SUITE 122 PHOENIX AZ 85016 742421549 501(C)(3) 25000 0 N/A N/A RESEARCH GRANT BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVE ENDERS 2 BOSTON MA 02115 042774441 501(C)(3) 50000 0 N/A N/A RESEARCH GRANT 5 IMPACT GRANT ASSISTANCE 10 57265 0 N/A N/A PART I, LINE 2 AFTER THE GRANT IS AWARDED, THE GRANTEE HAS TO SEND IN A LISTING OF EXPENDITURES ONCE INCURRED. THIS LIST OF EXPENSES IS REVIEWED AND COMPARED TO OTHER SIMILAR GRANTS AND THEIR EXPENDITURES BEFORE THE MONEY IS ISSUED TO THE GRANTEE. X X X 0 0 0 0 0 0 0 0 0 TRACY SMITH HART CHIEF EXECUTIVE OFFICER 194513 0 0 0 0 0 16462 0 10438 0 221413 0 0 0 FORM 990, PART VI, SECTION A, LINE 6 MEMBERSHIP IN THE OI FOUNDATION IS OPEN TO ALL PEOPLE WHO SUPPORT THE MISSION OF THE OI FOUNDATION. THE BOARD OF DIRECTORS DETERMINE THE LEVEL AND BENEFITS OF MEMBERSHIP, AND MAY CHANGE THESE FROM TIME TO TIME. ALL MEMBERS ARE ENTITLED TO VOTING PRIVILEGES. MEMBERSHIP BECOMES EFFECTIVE UPON RECEIPT OF DUES. FORM 990, PART VI, SECTION B, LINE 11B AFTER THE FORM 990 IS PREPARED BY THE INDEPENDENT ACCOUNTANTS IT IS REVIEWED BY THE AUDIT COMMITTEE BEFORE BEING FILED WITH THE IRS. FORM 990, PART VI, SECTION B, LINE 12C THE CONFLICT OF INTEREST POLICY COVERS ALL MEMBERS OF THE BOARD, ITS COMMITTEES, FOUNDATION STAFF AND THEIR IMMEDIATE FAMILIES AND BUSINESS ASSOCIATES. IT IS MONITORED BY ANNUAL WRITTEN INFORMATION QUESTIONNAIRE FROM THE BOARD PRESIDENT WHICH IS REVIEWED AND MAINTAINED BY THE AUDIT COMMITTEE CHAIR. THE ENTIRE BOARD REVIEWS EACH TRANSACTION TO COME BEFORE THE BOARD FOR POTENTIAL OR ACTUAL CONFLICTS OF INTEREST. IF POTENTIAL OR ACTUAL CONFLICTS (PAST, PRESENT OR FUTURE) ARE IDENTIFIED, THE PERSON DETERMINED TO HAVE A CONFLICT IS RECUSED FROM DELIBERATIONS AND VOTING. THE IDENTIFIED CONFLICTS OF INTEREST AND APPROPRIATE RECUSALS ARE DOCUMENTED IN THE MINUTES OF EACH BOARD OR COMMITEE MEETING. FORM 990, PART VI, SECTION B, LINE 15 THE PROCESS FOR DETERMINING COMPENSATION OF THE FOLLOWING PERSONS INCLUDES A REVIEW AND APPROVAL BY INDEPENDENT MEMBERS OF THE EXECUTIVE COMMITTEE. COMPARABILITY DATA USED IN THE REVIEW PROCESS IS OBTAINED FROM NATIONAL HEALTH COUNCIL SALARY SURVEY. THE DELIBERATIONS AND DECISIONS ARE DOCUMENTED IN THE MINUTES OF THE BOARD OR COMMITTEE MEETING. THE COMPENSATION DETERMINATION PROCESS APPLIES TO THE FOLLOWING OFFICES/POSITIONS AND THE MOST RECENT YEAR FOR WHICH THIS PROCESS WAS UNDERTAKEN FOR EACH IS IDENTIFIED: OFFICE/TITLE - CHIEF EXECUTIVE OFFICER YEAR OF MOST RECENT REVIEW/APPROVAL - 2024 FORM 990, PART VI, SECTION C, LINE 19 OI FOUNDATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, AND FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC ON ITS WEBSITE. FORM 990, PART XII, LINE 2C NO CHANGES FROM THE PRIOR YEAR. THE BOARD OF DIRECTORS IS RESPONSIBLE FOR THE SELECTION OF INDEPENDENT AUDITORS AND OVERSIGHT OVER THE INDEPENDENT AUDIT PROCESS.