Civic Intelligence

Osteogenesis Imperfecta Foundation Inc.

990 • Fiscal year 2023 • EIN 23-7076021

Jul 01, 2022 to Jun 30, 2023 • Filed on Feb 14, 2024

Organization ProfileWWW.OIF.ORG

View Organization Page

656 Quince Orchard Road 650Gaithersburg, MD 20878

(301) 947-0083

Siviq Scores

Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.

Liabilities / Assets

74th percentile

0.29x

Higher debt load relative to assets than 74% of similar nonprofits.

2023 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2023

Liabilities / Revenue

72nd percentile

0.30x

Higher debt load relative to revenue than 72% of similar nonprofits.

2023 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2023

Net Margin

54th percentile

5.8%

Higher net margin than 54% of similar nonprofits.

2023 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2023

Top Officer Pay

92nd percentile

$221,413

Higher top officer pay than 92% of similar nonprofits.

Top officer pay equals 10.0% of source-year revenue.

2023 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2023

Asset Growth

70th percentile

14%

Faster asset growth than 70% of similar nonprofits.

2023 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2022 to 2023

Revenue Growth

47th percentile

4.9%

Faster revenue growth than 47% of similar nonprofits.

2023 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2022 to 2023

Balance Sheet
Liabilities / Assets74th percentile

Assets

Up

$2,346,165

Up $292,075 (+14%) from 2022

Net Assets

Up

$1,675,247

Up $195,938 (+13%) from 2022

Liabilities

Up

$670,918

Up $96,137 (+17%) from 2022

Revenue And Expenses
Liabilities / Revenue72nd percentileNet Margin54th percentile

Revenue

Up

$2,214,512

Up $102,451 (+4.9%) from 2022

Expenses

Down

$2,085,298

Down $202,650 (-8.9%) from 2022

Net Income

Up

$129,214

Up $305,101 (+173%) from 2022

Historical Trend

Balance Sheet Trend

Asset Growth70th percentile

The highlighted filing sits inside the broader history for assets, liabilities, and net assets.

$3.0M$2.0M$1.0M$0Assets 2019: $1,768,258Liabilities 2019: $271,555Net Assets 2019: $1,496,7032019Assets 2020: $1,745,584Liabilities 2020: $381,897Net Assets 2020: $1,363,6872020Assets 2021: $2,230,527Liabilities 2021: $192,429Net Assets 2021: $2,038,0982021Assets 2022: $2,054,090Liabilities 2022: $574,781Net Assets 2022: $1,479,3092022Assets 2023: $2,346,165Liabilities 2023: $670,918Net Assets 2023: $1,675,2472023Assets 2024: $2,125,391Liabilities 2024: $547,455Net Assets 2024: $1,577,9362024Assets 2025: $1,660,457Liabilities 2025: $292,624Net Assets 2025: $1,367,8332025

Highlighted filing

2023

Assets$2,346,165
Liabilities$670,918
Net Assets$1,675,247
Open 2023 Filing

Operations Trend

Revenue Growth47th percentile

Revenue, expenses, and net income across loaded years, with this filing highlighted.

$3.0M$2.0M$1.0M$0-$1.0MRevenue 2019: $1,835,341Expenses 2019: $2,109,750Net Income 2019: -$274,4092019Revenue 2020: $1,544,189Expenses 2020: $1,643,730Net Income 2020: -$99,5412020Revenue 2021: $1,897,607Expenses 2021: $1,624,284Net Income 2021: $273,3232021Revenue 2022: $2,112,061Expenses 2022: $2,287,948Net Income 2022: -$175,8872022Revenue 2023: $2,214,512Expenses 2023: $2,085,298Net Income 2023: $129,2142023Revenue 2024: $2,271,920Expenses 2024: $2,451,085Net Income 2024: -$179,1652024Revenue 2025: $2,607,851Expenses 2025: $2,627,305Net Income 2025: -$19,4542025

Highlighted filing

2023

Revenue$2,214,512
Expenses$2,085,298
Net Income$129,214
Open 2023 Filing
Jump To
Filing Snapshot
Filing Period
Jul 1, 2022 to Jun 30, 2023
Signed
Feb 14, 2024
Return Version
2022v5.0
Gross Receipts
$2,362,035
Mission and Program Overview

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.

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.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$1,292,495$1,501,581▲ $209,086
Pledges and Grants Receivable$135,440$444,565▲ $309,125
Cash and Non-Interest-Bearing Accounts$483,443$153,116▼ $330,327
Prepaid Expenses and Deferred Charges$33,360$35,704▲ $2,344
Accounts Receivable$5,122$12,500▲ $7,378
Savings and Temporary Cash Investments$46,284$10,398▼ $35,886
Intangible Assets$15,886$8,182▼ $7,704
Inventories for Sale or Use$7,795$7,602▼ $193
Land, Buildings, and Equipment, Net$7,360$5,988▼ $1,372
Total Assets$2,054,090$2,346,165▲ $292,075
Other Assets Total$26,905$166,529▲ $139,624
Liabilities
Grants Payable$353,565$304,013▼ $49,552
Other Liabilities$13,893$152,094▲ $138,201
Accounts Payable and Accrued Expenses$85,832$145,717▲ $59,885
Deferred Revenue$96,491$44,094▼ $52,397
Unsecured Notes Loans Payable$25,000$25,000→ $0
Total Liabilities$574,781$670,918▲ $96,137
Net Assets / Fund Balance
Net Assets With Donor Restrictions$987,567$1,675,833▲ $688,266
Net Assets Without Donor Restrictions$491,742$-586▼ $492,328
Total Net Assets Fund Balance$1,479,309$1,675,247▲ $195,938
Total Liabilities and Net Assets / Fund Balance$2,054,090$2,346,165▲ $292,075

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$5,988$42,973$48,961
Other Land Buildings$0$4,966$4,966
Other Assets Org$139,624--

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2022$987,567$1,378,122--$1,675,833
2021$1,354,619$726,549--$987,567
2020$1,055,103$623,072--$1,354,619
2019$713,808$523,273--$1,055,103
2018$1,044,254$448,070--$713,808
Compensation and Service Providers
Top Officer Pay92nd percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Tracy Smith HartChief Executive OfficerFT$194,513$26,900$221,413
Katherine E CarterChief Program OfficerFT$123,543$6,287$129,830

Board Members and Trustees

NameTitle
Francis GlorieuxMedical Advisor Council Chair
Ted TrahanPresident
Christine Wyman RossiVice President
James M EarlyVice President
Billy HuangBoard Member
James SharplesBoard Member
Karen BraitmayerBoard Member
Michael SheridanBoard Member
Michelle FynanBoard Member
S Jacinta WhyteBoard Member
Tracy L MulroyBoard Member
V Reid Sutton MdBoard Member
Wendy E SacksBoard Member
Kenneth FinkelSecretary
Sharon MutnickTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$2,159,567
Program Service Revenue
$0
Investment Income
$50,847
Other Revenue
$4,098
All Other Contributions
$1,137,918
Change in Net Assets
$129,214

Audited Revenue Reconciliation

Revenue per Audited Statements
$2,321,331
Revenue Not Reported on Financial Statements
$-106,819
Revenue Not Reported on Form 990
$100,690
Other Revenue Adjustments
$-117,517
Total Revenue per Audited Statements
$2,422,021
Total Revenue per Form 990
$2,214,512
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$1,131,740
Other Expenses$554,521
Grants and Similar Amounts Paid$399,037
Total Fundraising Expense$90,889
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$525,249$169,600$40,041$734,890
Grants to Domestic Orgs$292,757--$292,757
Conferences and Meetings$236,657$7,525-$244,182
Current Officers, Directors, Trustees, and Key Employees$175,243$38,359$22,335$235,937
Grants to Domestic Individuals$106,280--$106,280
Other Employee Benefits$61,655$19,070$5,112$85,837
Payroll Taxes$47,247$14,136$4,153$65,536
Occupancy$42,775$10,045$3,702$56,522
Travel$35,827$8,413$3,101$47,341
Information Technology$7,270$25,030$629$32,929
All Other Expenses$20,208$7,111$1,840$29,159
Office Expenses$14,238$3,591$1,232$19,061
Fees for Services Accounting-$16,700-$16,700
Other Expenses$9,793$2,300$848$12,941
Fees for Service Investment Mgmnt Fees-$10,698-$10,698
Depreciation Depletion$8,015$1,881$694$10,590
Pension Plan Contributions$6,512$2,945$83$9,540
Insurance$5,109$927$2,857$8,893
Fees for Services Other$4,905$1,268$422$6,595
Interest-$1,714-$1,714
Total Functional Expenses$1,627,739$366,670$90,889$2,085,298

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$2,226,083
Expenses per Audited Statements$2,192,117
Total Expenses per Form 990$2,085,298
Expenses Not Reported on Form 990$33,966
Expenses Not Reported on Financial Statements$-106,819
Other Expense Adjustments$-117,517
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of South FloridaTampa, FL501(c)(3)Contact Registry$69,940
BOSTON CHILDREN'S HOSPITALBoston, MA501(c)(3)Research Grant$50,000
Baylor College of MedicineHouston, TX501(c)(3)Research Grant$50,000
University of California - Los AngelesLos Angeles, CA501(c)(3)Research Grant$50,000
PHOENIX CHILDREN'S HOSPITAL FOUNDATIONPhoenix, AZ501(c)(3)Research Grant$25,000

International Summary

Offices
0
Employees
0
Spending
$95,000

International Compliance

Foreign grant records maintained
No
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No

International Activities

RegionActivityServicesOfficesEmployeesSpending
North America - Canada and Mexico, But Not the United StatesResearch GrantBrittle Bone Disorders Consortium Research Grant00$50,000
North America - Canada and Mexico, But Not the United StatesResearch GrantBrittle Bone Disorders Consortium Research Grant00$45,000
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$117,517
Fundraising Gross Income$84,171
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Strong Bones Houston$105,680$18,730$2,172$16,558
Fine Wines Naples$89,191$13,875$1,894$11,981
Total Events$416,193$84,171$117,517$-33,346
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Operating Lease Liability$152,094
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

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.”

Filing and Contact Details

Filer

Filer Name
Osteogenesis Imperfecta Foundation
EIN
23-7076021
Phone
3019470083
Address
656 QUINCE ORCHARD ROAD 650, GAITHERSBURG, MD 20878

Signing Officer

Name
Tracy Smith Hart
Title
Chief Executive Officer
Phone
3019470083
Signed
2024-02-14
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Tracy Smith Hart
Formed
1970
Legal Domicile
Ga
Voting Board Members
15
Independent Board Members
15
Employees
13
Volunteers
100

Preparer

Firm
Renner and Company CPA Pc
Address
700 NORTH FAIRFAX STREET SUITE 400, ALEXANDRIA, VA 22314
Preparer
Andrew E Young CPA
Phone
7035351200
Supplemental Narrative

Additional Explanations

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.”

Financial Statement Notes

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.”

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This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990/ActivityOrMissionDesc0OSTEOGENESIS 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.
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IRS990/Desc0RESEARCH: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 PROGRAMM
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IRS990/Form990PartVIISectionAGrp/PersonNm1JAMES M EARLY
IRS990/Form990PartVIISectionAGrp/PersonNm2CHRISTINE WYMAN ROSSI
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IRS990/Form990PartVIISectionAGrp/PersonNm9TRACY L MULROY
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IRS990/MissionDesc0OUR 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.
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IRS990/ProgSrvcAccomActy2Grp/Desc0EDUCATION 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.
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IRS990/ProgSrvcAccomActy3Grp/Desc0OIF 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.
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IRS990/ProgSrvcAccomActyOtherGrp/Desc0PUBLIC 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.
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Document Assets

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Filings

Displayed year

2023 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$2,346,165
Liabilities
$670,918
Net assets
$1,675,247
Revenue
$2,214,512
Expenses
$2,085,298
Net income
$129,214
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2025Detailed filing. Detailed filing data is available for this year.$1.66$0.29$1.37$2.61$2.63$0.02
2024XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$2.13$0.55$1.58$2.27$2.45$0.18
2023Detailed filing. Detailed filing data is available for this year.$2.35$0.67$1.68$2.21$2.09$0.13
2022Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.05$0.57$1.48$2.11$2.29$0.18
2021Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.23$0.19$2.04$1.90$1.62$0.27
2020XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$1.75$0.38$1.36$1.54$1.64$0.10
2019XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$1.77$0.27$1.50$1.84$2.11$0.27