Osteogenesis Imperfecta Foundation Inc
Osteogenesis Imperfecta Foundation Inc
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About this organization
Mission
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.
About
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 FOR THE SON OF OIF 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 FROM THE NATIONAL INSTITUTES OF HEALTH, NIAMS. DR. KANG'S RESEARCH WAS TITLED PEDF-PARY-CYCLOPHILINA/B PATHWAY MODULATES OSTEOGENESIS IMPERFECTA.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 INSTITUTES OF HEALTH (NIH). EVERY THIRD YEAR, OIF JOINS OTHER OI ASSOCIATIONS AT THE INTERNATIONAL SCIENTIFIC CONGRESS ON OI.A KEY ACTIVITY FOR THE FOUNDATION CONTINUES TO BE THE PARTICIPATION IN THE BRITTLE BONE DISORDERS CONSORTIUM (BBDC). OIF IS RESPONSIBLE FOR PROVIDING EDUCATION TO MEDICAL PROFESSIONALS THROUGH MATERIALS AND MEETINGS DESIGNED TO GIVE THE MOST UP-TO-DATE INFORMATION ON OI CARE AND RESEARCH. THROUGH THE SUPPORT OF THE FOUNDATION, SUPPORTED LINKED CLINICAL RESEARCH CENTERS (LCRC), AND CONSTITUENT PARTICIPATION, OIF WAS ABLE TO GATHER IMPORTANT INFORMATION ABOUT INDIVIDUALS LIVING WITH OI AND FORM THE FOUNDATION ON WHICH THE BBDC WAS BUILT. THIS IS THE ONLY RARE DISEASE NETWORK AT THE NIH THAT IS STUDYING BONE AND SPECIFICALLY OI. UNDER THE LEADERSHIP OF OIF MEDICAL ADVISORY COUNCIL MEMBER, DR. BRENDAN LEE OF BAYLOR COLLEGE OF MEDICINE, THE BBDC HAS COMPLETED SEVEN STUDIES AND HAS SEVERAL MORE IN PROGRESS. MORE THAN 1,500 PEOPLE HAVE JOINED THE BBDC CONTACT REGISTRY AND THE CONSORTIUM CONTINUES TO WORK WITH ITS PARTNERS INCLUDING TAMPA SHRINERS HOSPITAL FOR CHILDREN, A.I. DUPONT HOSPITAL FOR CHILDREN, COLOGNE HOSPITAL IN COLOGNE, GERMANY, BAYLOR COLLEGE OF MEDICINE, MONTREAL SHRINERS HOSPITALS FOR CHILDREN, CHICAGO SHRINERS HOSPITALS FOR CHILDREN, KENNEDY KREIGER INSTITUTE, HOSPITAL FOR SPECIAL SURGERY, OREGON HEALTH AND SCIENCE UNIVERSITY AND NATIONAL CHILDREN'S MEDICAL CENTER. THE CLINICAL RESEARCH IN PROGRESS INCLUDES A PHASE I DRUG STUDY, A STUDY ON SCOLIOSIS IN PEOPLE WITH SEVERE OI, PREGNANCY AND OI, DENTINOGENESIS IMPERFECTA AND OTHER DENTAL/CRANIOFACIAL ISSUES AND OI, A BIOMARKERS STUDY, AND A QUALITY OF LIFE AND OI STUDY.OIF CONTINUES TO IMPROVE ITS WEB BASED "TOOL KIT" CALLED THE INFORMATION FOR MEDICAL PROFESSIONALS, WHICH WAS DEVELOPED AS PART OF THE BBDC. THE INFORMATION CENTER, LOCATED AT WWW.OIF.ORG/MEDED, 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 (20 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 A TOTAL OF 1,609 TIMES DURING CALENDAR YEAR 2019, AND ARE A VERY POPULAR FEATURE OF OIF'S MEDICAL PROFESSIONAL EDUCATIONAL OUTREACH.
Interesting data from their 2020 990 filing
The non-profit's mission, as described in the filing, is “To improve the quality of life for people with osteogenesis imperfecta (oi), through (a) research to find a cure, (b) education (c) awareness, and (d) mutual support.”.
When describing its duties, they were characterized as: “Our mission is to improve the quality of life for people with osteogenesis imperfecta 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. oi regional mettings in chicago and los angeles, oi scientific meetingi in chicago, and rare bone disease patient network meeting were among the significant 2019 fiscal year highlights.”.
- The non-profit has complied with legal regulations by reporting their state of operation as GA.
- The filing shows that the non-profit's address as of 2020 is 804 W DIAMOND AVENUE NO 210, GAITHERSBURG, MD, 20878.
- As of 2020, the non-profit has reported a total of 12 employees on their form.
- Is not a private foundation.
- Expenses are greater than $1,000,000.
- Revenue is greater than $1,000,000.
- Revenue less expenses is -$274,409.
- The organization has 13 independent voting members.
- The organization was formed in 1970.
- The organization pays $964,609 in salary, compensation, and benefits to its employees.
- The organization pays $219,207 in fundraising expenses.
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