OSTEOGENESIS IMPERFECTA FOUNDATION
804 W DIAMOND AVENUE NO 210, GAITHERSBURG, MD 20878 www.oif.org

---

Organizations Filed Purposes: 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.

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. HEESEOG KANG.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 - IN THE SPRING OF 2019, THE OIF WAS APPROVED FOR A TWO-YEAR FUNDING AWARD 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 IN 2010 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 - STARTING IN THE SUMMER OF 2019, THE OIF, IN COLLABORATION WITH THE RARE BONE DISEASE ALLIANCE AND OIF MEDICAL ADVISORY COUNCIL MEMBER DR. LAURA TOSI OF CHILDREN'S NATIONAL HOSPITAL, HELPED LAUNCH THE INAUGURAL RARE BONE DISORDER ECHO CLINIC. ECHO (EXTENSION FOR COMMUNITY HEALTHCARE OUTCOMES) IS A DIGITAL MEDICAL EDUCATION PROGRAM THAT INCREASES A PHYSICIAN'S ACCESS TO EXPERT KNOWLEDGE TO HELP THEM IMPROVE THEIR QUALITY OF CARE. THE RARE BONE ECHO HELPS TO SPREAD KNOWLEDGE OF RARE BONE CONDITIONS LIKE OI TO PHYSICIANS AND MEDICAL PRACTITIONERS THROUGH MONTHLY VIDEO TELE-MENTORING SESSIONS. BY INCREASING ACCESS TO EXPERT MEDICAL KNOWLEDGE FOR PHYSICIANS IN THIS CUTTING EDGE AND COST-EFFECTIVE MODEL, THE OIF CAN HELP INCREASE THE STANDARD OF CARE FOR PEOPLE WITH RARE BONE CONDITIONS. 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 OI FOUNDATION 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). OIF INFORMATION CENTER - THE FOUNDATION PROVIDES MEDICALLY VERIFIED INFORMATION RELATED TO OI. TOPICS RANGE FROM MEDICAL ISSUES SUCH AS GENETICS, DIAGNOSIS, AND, TREATMENTS TO DAILY LIVING STRATEGIES SUCH AS SCHOOL AND EMPLOYMENT. EDUCATIONAL MATERIALS ARE AVAILABLE IN PRINT AND ELECTRONICALLY THROUGH THE OIF WEBSITE. THIS PAST YEAR, OIF STAFF RESPONDED TO MORE THAN 11,000 DIRECT INQUIRIES FOR INFORMATION. THE OI FOUNDATION'S INFORMATION CENTER, LOCATED AT WWW.OIF.ORG/INFORMATIONCENTER, COVERS INFORMATION ABOUT OI, BOTH ISSUES THAT AFFECT CHILDREN AND ADULTS, AND PROVIDES ONLINE RESOURCES FOR PROVIDERS WHO SEE FEW OI PATIENTS. THE SITE IS ALSO HOST TO OIF PODCASTS (25 TO DATE) ON A VARIETY OF TOPICS INCLUDING; SPINE ISSUES AND BASILAR INVAGINATION IN OI; DENTAL; SURGICAL INTERVENTIONS; PREGNANCY AND OI; HEARING LOSS AND OI; MENTAL HEALTH AND THE OI PATIENT; TREATMENT OPTIONS FOR ADULTS AND CHILDREN AND AN OVERVIEW OF THE DIAGNOSIS AND TREATMENT OF OI. THE PODCASTS HAVE BEEN DOWNLOADED MORE THAN 5,000 TIMES AND ARE A VERY POPULAR FEATURE OF OIF'S MEDICAL PROFESSIONAL EDUCATIONAL OUTREACH.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.THE OIF SUCCESSFULLY CO-SPONSORED A RARE BONE DISEASE WORKING GROUP MEETING AT THE AMERICAN SOCIETY OF BONE AND MINERAL RESEARCH (ASBMR) ANNUAL MEETING IN SEPTEMBER 2019. THE MEETING GATHERED MORE THAN 200 SCIENTISTS AND MEDICAL PROFESSIONALS. THE MEETING WAS CHAIRED BY DR. LAURA TOSI, A MEMBER OF THE OIF'S MEDICAL ADVISORY COUNCIL, AND INCLUDED TOPICS SUCH AS MANAGEMENT PEARLS TO ENHANCE THE CARE OF PATIENTS WITH RARE BONE DISEASES, NEW DISEASE MODELS, AND CLINIC TRIAL UPDATES.OI ADULT HEALTH INITIATIVE - IN FISCAL YEAR 2018, OIF FUNDED THE FIRST YEAR OF A NEW CARDIOPULMONARY GRANT. 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.

EDUCATION AND SUPPORT: 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 FOUNDATION SPONSORS A NETWORK OF SUPPORT GROUPS ACROSS THE UNITED STATES. SUPPORT GROUP ACTIVITIES PROVIDE OPPORTUNITIES FOR MUTUAL SUPPORT AND INCREASED COMMUNITY AWARENESS. CURRENTLY, THERE ARE 38 ACTIVE GROUPS IN 32 STATES. 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 23 APPLICANTS FOR FUNDING FOR A TOTAL OF $100,000. ITEMS AND SERVICES FUNDED THIS YEAR INCLUDE; HEARING AIDS, WHEELCHAIRS, AN ACCESSIBLE VAN, FINGER SPLINTS, AND COMPUTERS.

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. THE NEXT CONFERENCE WILL BE HELD IN JULY 2021 IN OMAHA, NEBRASKA.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. IN FISCAL YEAR 2020, THE FOUNDATION HELD THREE REGIONAL CONFERENCES IN ATLANTA, GEORGIA (AUGUST 2019); SACRAMENTO, CALIFORNIA (AUGUST 2019); AND WILMINGTON, DELAWARE (OCTOBER 2019).

---

---

Data for this page was sourced from XML published by IRS (public 990 form dataset) from: https://s3.amazonaws.com/irs-form-990/202130609349301903_public.xml