Osteogenesis Imperfecta Foundation Inc

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.

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.

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.

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.

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.