OSTEOGENESIS IMPERFECTA FOUNDATION

RESEARCH AND PROFESSIONAL EDUCATION: OIF SCIENTIFIC MEETING - THE 24TH ANNUAL OI FOUNDATION SCIENTIFIC MEETING WAS HELD IN CHICAGO, ILLINOIS ON APRIL 9-11, 2025. THE MEETING WAS CO-CHAIRED BY DR. RONIT MAROM (BAYLOR COLLEGE OF MEDICINE) AND DR. ROY MORELLO (UNIVERSITY OF ARKANSAS), BOTH OF WHOM ARE PAST OIF MICHAEL GEISMAN RECIPIENTS. THIS YEAR'S MEETING, TITLED, TRANSLATING DISCOVERIES INTO THERAPIES, BEGAN ON WEDNESDAY EVENING WITH A KEYNOTE ADDRESS FROM DR. NICK BISHOP (SCHOOL OF MEDICINE AND POPULATION HEALTH, UNIVERSITY OF SHEFFIELD, UK) WHO DISCUSSED DRUG REPURPOSING IN THE TREATMENT OF OI. OI CLINIC AND BONE HEALTH TOWN HALL MEETINGS - THE OIF CONTINUES TO HOST TWO OI CLINIC AND BONE HEALTH TOWN HALL MEETINGS EACH YEAR. THESE MEETINGS 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. ATTENDANCE RANGES FROM 50-100+ PER MEETING. VIRTUAL COMMUNITY CALLS - IN FEBRUARY 2025, THE OIF HELD A RESEARCH UPDATE WITH REPRESENTATIVES FROM AMGEN ON THEIR UPCOMING PHASE 3 CLINICAL TRIAL FOR ROMOSUZAMAB. IN THIS VIRTUAL SESSION WITH 45 ATTENDEES, DR. DIALA EL-MAOUCHE, CLINICAL RESEARCH MEDICAL DIRECTOR OF BONE, AND NAZILA SADIGHI JAFARI, CLINICAL PROGRAM MANAGER FOR THE TRIAL, PRESENTED DETAILS ABOUT THE 1-YEAR CLINICAL TRIAL, AND ANSWERED QUESTIONS FROM THE OIF AND FROM THE COMMUNITY MEMBERS IN ATTENDANCE. THE SESSION WAS WELL RECEIVED BY ATTENDEES, AND THE AMGEN REPRESENTATIVES WERE ABLE TO ANSWER MANY QUESTIONS ON THE CLINICAL TRIAL. AMGEN REQUESTED THAT THIS EVENT NOT BE RECORDED BECAUSE THEY WERE NOT ABLE TO GET IRB APPROVAL FROM THE OTHER COUNTRIES THAT THE TREATMENT WAS BEING TRIALED IN, AND SOME HAD STRICT RULES AROUND PROMOTING MEDICAL TREATMENTS OR TRIALS. IN MAY, THE OIF HOSTED A CALL WITH DR. ERIC STORCH, PSYCHOLOGIST AT BAYLOR COLLEGE OF MEDICINE, ON THE BBDC OI WELLBEING STUDY, WHICH HAS PROGRESSED IN ITS PUBLICATION TIMELINE. HE SHARED FINDINGS FROM MULTIPLE PUBLICATIONS THAT HAVE COME FROM THE STUDY AND OUTLINED THE FUTURE OF THAT PROJECT. IN SEPTEMBER, THE OIF HOSTED ANOTHER CALL WITH CHRISTOPHER JOSEPH DPT, DIRECTOR OF PHYSICAL THERAPY AT KENNEDY KRIEGER INSTITUTE WHO DISCUSSED MUSCLE GROWTH, WEIGHT MANAGEMENT, AND OI. RARE BONE DISEASE TELEECHO CLINIC SERIES - THE RARE BONE DISEASE TELEECHO IS HALFWAY THROUGH ITS 6TH YEAR, AND THE PROGRAM HAS CONTINUED TO SHOWCASE RARE BONE DISEASE TOPICS TO AN INTERNATIONAL AUDIENCE OF RESEARCHERS AND MEDICAL PROFESSIONALS. THE PAST YEAR HAS HAD A COMBINATION OF NEW AND RETURNING SPEAKERS. ONE AREA OF GROWTH HAS BEEN THE NEW FEEDBACK AND SUPPORT FROM THE NEWEST RBD ECHO FACULTY MEMBER, CARLOS FERREIRA, MD (NATIONAL INSTITUTE OF HEALTH). DR. FERREIRA HAS HELPED THE ECHO PROGRAM FIND NEW RARE DISEASE TOPICS AND IS HELPING DR. TOSI CONNECT WITH NEW SPEAKERS. THIS HAS HELPED THE RBD ECHO EXPLORE NEW TOPICS AND EXPAND ITS PROFESSIONAL OUTREACH. GI SURVEY - TO BETTER UNDERSTAND THE RELATIONSHIP BETWEEN OI AND GASTROINTESTINAL SYMPTOMS, THE OIF DEVELOPED A SURVEY MEANT TO CAPTURE MAJOR CORRELATIONS BETWEEN OI AND GI CONCERNS. NEARLY 400 COMMUNITY MEMBERS RESPONDED TO THE SURVEY AND THE OIF IS IN THE PROCESS OF ANALYZING THE DATA IN HOPES OF IDENTIFYING TRENDS THAT CAN HELP IDENTIFY FUTURE RESEARCH PRIORITIES. MICHAEL GEISMAN FELLOWSHIP GRANT - THIS YEAR THE OIF SCIENTIFIC REVIEW COMMITTEE SELECTED ROYA BAGHERI, PHD, AS THE OI FOUNDATION'S NEWEST MICHAEL GEISMAN FELLOW WITH HER PROJECT INVESTIGATING THE BIOMECHANICS AND PATHWAYS UNDERLYING PULMONARY VULNERABILITY IN OSTEOGENESIS IMPERFECTA. THE MICHAEL GEISMAN FELLOWSHIP GRANT PROGRAM AWARDS FUNDING UP TO $50,000 PER YEAR, FOR TWO YEARS, TO POSTDOCTORAL TRAINEES WHO ARE CURRENTLY WORKING ON PROJECTS WITH CLEAR RELEVANCE TO OSTEOGENESIS IMPERFECTA, OR WHO HAVE PROJECTS THAT WILL ENABLE THEM TO DEVELOP EXPERTISE IN OI RESEARCH. DR. BAGHERI IS A POSTDOCTORAL RESEARCH FELLOW AT THE UNIVERSITY OF CALIFORNIA, LOS ANGELES. SHE HOLDS A BACHELOR OF SCIENCE IN MATERIAL SCIENCE AND ENGINEERING FROM IRAN UNIVERSITY OF SCIENCE AND TECHNOLOGY, A MASTER OF SCIENCE IN BIOMEDICAL ENGINEERING FROM THE UNIVERSITY OF TEHRAN, AND A DOCTOR OF PHILOSOPHY IN MECHANICAL ENGINEERING FROM MICHIGAN TECHNOLOGICAL UNIVERSITY. MARIE COUSSENS, PHD (GHENT UNIVERSITY) CONTINUES HER WORK AS A MICHAEL GEISMAN FELLOWSHIP RECIPIENT.

EDUCATION AND SUPPORT:ADULT HEALTH INITIATIVES - THE OIF CONTINUES TO PRIORITIZE OUR WORK TO BETTER UNDERSTAND THE IMPACT OF OI AS PEOPLE AGE, AND WAYS WE CAN BEST SERVE OUR ADULT COMMUNITY. IN ADDITION TO PRODUCING RESOURCES LIKE THE OI ADULT HEALTH TOOLKIT TO HELP OUR ADULT COMMUNITY MANAGE THEIR CARE, THE OIF PARTNERS WITH CLINICIANS, RESEARCHERS, AND OTHER RARE BONE DISEASE GROUPS TO CONTINUE TO LEARN MORE ABOUT HOW OI IMPACTS THE BODY AS A PERSON AGES AND IMPORTANT ISSUES FACING THE ADULT COMMUNITY LIKE THE TRANSITION OF CARE FROM PEDIATRIC TO ADULT CARE AND GAPS IN ADULT CARE. WORK CONTINUES ON THE OIF'S SOMEWHERE TO GO FOR ADULTS WITH CHILDHOOD-ONSET RARE DISEASE PROJECT, WHICH AIMS TO IDENTIFY AND ADDRESS THE CHALLENGES AND SOLUTIONS FOR TRANSITIONING PATIENTS FROM PEDIATRIC TO ADULT CARE, PARTICULARLY FOR THOSE WITH RARE AND COMPLEX HEALTH ISSUES. SUPPORT GROUP PROGRAM - COMMUNITY FEEDBACK HAS INDICATED A DESIRE FOR SUPPORT GROUPS TAILORED TO SPECIFIC DEMOGRAPHICS (E.G., WOMEN WITH OI, PARENTS OF CHILDREN WITH OI, TEENS, ETC.). THIS FEEDBACK HAS BEEN VOICED DURING REGIONAL SUPPORT GROUP MEETINGS, EITHER VERBALLY OR THROUGH CHAT, AS WELL AS OUTSIDE OF THESE MEETINGS THROUGH DIRECT INQUIRIES TO OIF STAFF. BASED ON THE DATA AND COMMUNITY FEEDBACK, THE OIF HAS DECIDED TO REVAMP THE PROGRAM BY TRANSITIONING TO AFFINITY GROUPS. THE OIF IS CONSIDERING ESTABLISHING GROUPS FOR WOMEN WITH OI, MEN WITH OI, PARENTS OF CHILDREN WITH OI, YOUNG ADULTS (AGES 18-30), AND INDIVIDUALS AGING WITH OI. THE OIF PLANS TO LAUNCHING THE AFFINITY SUPPORT GROUPS WITHIN THE NEXT FISCAL YEAR BY THE END OF 2025.TOOLKIT FOR SCHOOL-AGED FAMILIES - THE OIF HAS ALMOST COMPLETED THE FINAL DRAFT OF THE TOOLKIT FOR SCHOOL-AGED FAMILIES AND IS IN THE PROCESS OF SENDING OUT SPECIFIC SECTIONS FOR REVIEW AND FEEDBACK MEDICAL PROFESSIONAL AND COMMUNITY-MEMBERS. TOPICS INCLUDED IN THIS NEWEST RESOURCE COVER DAYCARE/AFTER-CARE PROGRAMS, EXTRACURRICULAR ACTIVITIES, NAVIGATING THE SCHOOL SYSTEM (IEP/504 PLANS, HOME AND HOSPITAL TEACHING, TRANSITIONS BETWEEN ELEMENTARY, MIDDLE, HIGH SCHOOL, AND COLLEGE), AND AGE-APPROPRIATE LANGUAGE, DEFINITIONS, ADVOCACY INFORMATION AND RESOURCES FOR EACH AGE GROUP. LIKE THE OIF'S EXISTING TOOLKITS ON ADULT HEALTH AND NAVIGATING A NEW DIAGNOSIS, THE SCHOOL AGE TOOLKIT WILL BE A COMPREHENSIVE BOOKLET, AVAILABLE ELECTRONICALLY AND IN-PRINT IN ENGLISH, SPANISH AND FRENCH, WITH INFORMATION FOR BOTH PATIENTS AND PROVIDERS. THESE INFORMATIONAL TOOLKITS ARE AN EFFECTIVE WAY FOR FAMILIES TO LEARN HOW TO BEST MANAGE AT ALL STAGES OF LIFE, AND ARE AN EASY RESOURCE TO SHARE WITH PROVIDERS, TEACHERS AND SCHOOLS. TO DATE, THE OI ADULT HEALTH AND THE NAVIGATING A NEW DIAGNOSIS TOOLKITS HAVE BEEN ACCESSED ELECTRONICALLY MORE THAN 21,000 TIMES AND THERE ARE MORE THAN 3,500 COPIES IN PRINT.YOUNG ADULT ENGAGEMENT - IN JANUARY AND FEBRUARY 2025, THE OIF INTERVIEWED AND HOSTED LISTENING SESSIONS WITH YOUNG ADULTS (18-30 YEARS OLD) WITH OI. THIS PROJECT BEGAN BECAUSE YOUNG ADULTS HAVE BEEN UNDERREPRESENTED AT PAST OIF EVENTS AND IN VIRTUAL PROGRAMS, AND WE WANTED TO LEARN MORE ABOUT THE NEEDS OF THIS GROUP AND THEIR PERCEPTIONS OF THE OIF. OVERALL, WE SPOKE WITH A TOTAL OF 9 YOUNG ADULTS OVER 2 WEEKS. IN THESE CONVERSATIONS, SOME TRENDS AND TAKEAWAYS EMERGED. EDWARD D. CRANSTON COLLEGE SCHOLARSHIP - THE EDWARD D. CRANSTON COLLEGE SCHOLARSHIP IS FOR STUDENTS WITH OSTEOGENESIS IMPERFECTA WHO ARE APPLYING TO OR HAVE BEEN ADMITTED TO A COLLEGE OR UNIVERSITY. APPLICANTS MUST ARTICULATE A NEED FOR SCHOLARSHIP ASSISTANCE TO MEET THEIR ACADEMIC GOALS, BE COMMITTED TO FULL-TIME COLLEGE ENROLLMENT, AND SHOW PROOF OF ENROLLMENT TO RECEIVE THE FUNDS. THE CURRENT CYCLE OPENED ON JANUARY 13TH AND WILL RUN THROUGH APRIL 14TH. THE REVIEW COMMITTEE WILL MEET IN MAY TO DISCUSS AND CHOOSE A RECIPIENT. ANGEL PACHECO, WHO IS ATTENDING THE UNIVERSITY OF NEW MEXICO, WAS THE RECIPIENT OF THE SCHOLARSHIP FOR THE 2024 CYCLE. ANGEL WAS SELECTED FROM NEARLY 30 APPLICANTS BY A COMMITTEE COMPRISED OF OI FOUNDATION BOARD OF DIRECTORS MEMBERS AND OI COMMUNITY MEMBERS. WE ARE PROUD TO SUPPORT ANGEL AS SHE MOVES FORWARD IN HER EDUCATION.CBBF/OIF JEANNE COLEMAN IMPACT GRANTS - IN PARTNERSHIP WITH THE CHILDREN'S BRITTLE BONE FOUNDATION, THE JEANIE COLEMAN IMPACT GRANT PROGRAM WAS DESIGNED TO PROVIDE FUNDING FOR ITEMS AND SERVICES THAT WILL SIGNIFICANTLY IMPROVE THE QUALITY OF LIFE FOR A PERSON WHO HAS OI AND LIMITED FINANCIAL RESOURCES. IN 2024, THE OI FOUNDATION AND CBBF WERE ABLE TO FUND $175,193 FOR 23 FAMILIES COVERING A RANGE OF ITEMS AND SERVICES INCLUDING (BUT NOT LIMITED TO) 2024 OIF NATIONAL CONFERENCE ATTENDANCE, WHEELCHAIR ACCESSIBLE VEHICLES, PHYSICAL THERAPY, BRACES, AND HEARING AIDS. THE 2025 CYCLE OPENED ON JANUARY 6TH AND CLOSED ON FEBRUARY 14TH. THE REVIEW COMMITTEE IS CURRENTLY WORKING TO RANK AND SCORE THE 65 APPLICATIONS RECEIVED AND WILL MEET IN THE FIRST WEEK OF APRIL TO DISCUSS AND CHOOSE RECIPIENTS.