Civic Intelligence

Osteogenesis Imperfecta Foundation Inc.

990 • Fiscal year 2020 • EIN 23-7076021

Jul 01, 2019 to Jun 30, 2020 • Filed on Feb 08, 2021

Organization ProfileWWW.OIF.ORG

View Organization Page

804 W Diamond Avenue No 210Gaithersburg, MD 20878

(301) 947-0083

Siviq Scores

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

Liabilities / Assets

64th percentile

0.22x

Higher debt load relative to assets than 64% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2020

Liabilities / Revenue

64th percentile

0.25x

Higher debt load relative to revenue than 64% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2020

Net Margin

26th percentile

-6.4%

Higher net margin than 26% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2020

Top Officer Pay

90th percentile

$205,760

Higher top officer pay than 90% of similar nonprofits.

Top officer pay equals 13.3% of source-year revenue.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2020

Asset Growth

27th percentile

-1.3%

Faster asset growth than 27% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2019 to 2020

Revenue Growth

27th percentile

-16%

Faster revenue growth than 27% of similar nonprofits.

2020 filings • 501(c)3 • $1M-$5M nonprofits • Annualized from 2019 to 2020

Balance Sheet
Liabilities / Assets64th percentile

Assets

Down

$1,745,584

Down $22,674 (-1.3%) from 2019

Net Assets

Down

$1,363,687

Down $133,016 (-8.9%) from 2019

Liabilities

Up

$381,897

Up $110,342 (+41%) from 2019

Revenue And Expenses
Liabilities / Revenue64th percentileNet Margin26th percentile

Revenue

Down

$1,544,189

Down $291,152 (-16%) from 2019

Expenses

Down

$1,643,730

Down $466,020 (-22%) from 2019

Net Income

Up

-$99,541

Up $174,868 (+64%) from 2019

Historical Trend

Balance Sheet Trend

Asset Growth27th 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

2020

Assets$1,745,584
Liabilities$381,897
Net Assets$1,363,687
Open 2020 Filing

Operations Trend

Revenue Growth27th 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

2020

Revenue$1,544,189
Expenses$1,643,730
Net Income-$99,541
Open 2020 Filing
Jump To
Filing Snapshot
Filing Period
Jul 1, 2019 to Jun 30, 2020
Signed
Feb 8, 2021
Return Version
2019v5.2
Gross Receipts
$2,080,205
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$1,348,450$1,157,948▼ $190,502
Pledges and Grants Receivable$101,119$161,526▲ $60,407
Cash and Non-Interest-Bearing Accounts$29,303$157,006▲ $127,703
Savings and Temporary Cash Investments$118,528$102,435▼ $16,093
Prepaid Expenses and Deferred Charges$35,514$72,429▲ $36,915
Intangible Assets-$30,294-
Accounts Receivable$60,167$22,500▼ $37,667
Inventories for Sale or Use$13,212$7,901▼ $5,311
Land, Buildings, and Equipment, Net$36,940$6,640▼ $30,300
Total Assets$1,768,258$1,745,584▼ $22,674
Other Assets Total$25,025$26,905▲ $1,880
Liabilities
Accounts Payable and Accrued Expenses$95,526$193,821▲ $98,295
Unsecured Notes Loans Payable-$124,000-
Grants Payable$161,826$45,516▼ $116,310
Deferred Revenue$14,145$18,560▲ $4,415
Other Liabilities$58--
Total Liabilities$271,555$381,897▲ $110,342
Net Assets / Fund Balance
Net Assets With Donor Restrictions$713,808$1,055,103▲ $341,295
Net Assets Without Donor Restrictions$782,895$308,584▼ $474,311
Total Net Assets Fund Balance$1,496,703$1,363,687▼ $133,016
Total Liabilities and Net Assets / Fund Balance$1,768,258$1,745,584▼ $22,674

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$6,640$34,042$40,682
Other Land Buildings$0$4,966$4,966

Endowment Activity

PeriodBeginningContrib.Gain/LossOther UsesEnd
2019$713,808$523,273--$1,055,103
2018$1,044,254$448,070--$713,808
2017$886,552$716,807--$1,044,254
2016$698,330$745,093--$886,552
2015$625,566$584,861--$698,330
Compensation and Service Providers
Top Officer Pay90th percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Tracy Smith HartChief Executive OfficerFT$184,852$20,908$205,760

Board Members and Trustees

NameTitle
Kenneth W GudekImmediate Past President
Cameron R PennPresident
Kara AyersVice President
Brett EisenbergBoard Member
Eric GouldBoard Member
Francis GlorieuxBoard Member
James M EarlyBoard Member
Joe HallBoard Member
Kenneth FinkelBoard Member
Laura TosiBoard Member
Michele BurkaBoard Member
S Jacinda WhyteBoard Member
Sharon MutnickBoard Member
Christine RossiSecretary
Ted TrahanTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$1,514,210
Program Service Revenue
$115,045
Investment Income
$62,157
Other Revenue
$-147,223
All Other Contributions
$856,983
Change in Net Assets
$-99,541

Audited Revenue Reconciliation

Revenue per Audited Statements
$1,678,848
Revenue Not Reported on Financial Statements
$-134,659
Revenue Not Reported on Form 990
$11,725
Other Revenue Adjustments
$-145,255
Total Revenue per Audited Statements
$1,690,573
Total Revenue per Form 990
$1,544,189
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$1,012,851
Other Expenses$442,571
Grants and Similar Amounts Paid$188,308
Total Fundraising Expense$173,305
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$438,954$132,150$75,998$647,102
Current Officers, Directors, Trustees, and Key Employees$153,695$45,204$27,123$226,022
Grants to Domestic Orgs$95,982--$95,982
Grants to Domestic Individuals$92,326--$92,326
Occupancy$50,907$20,734$8,857$80,498
Office Expenses$37,210$7,572$30,448$75,230
Conferences and Meetings$72,906$565-$73,471
Payroll Taxes$44,416$13,298$7,726$65,440
Other Employee Benefits$38,093$11,458$6,600$56,151
Information Technology$14,518$24,883$924$40,325
Fees for Services Accounting-$39,286-$39,286
Fees for Services Other$25,179$10,083$685$35,947
Pension Plan Contributions$12,300$3,710$2,126$18,136
Insurance$8,704$1,805$4,829$15,338
Depreciation Depletion$9,543$2,826$1,576$13,945
Fees for Service Investment Mgmnt Fees-$10,596-$10,596
Travel$5,720$137$4,622$10,479
Interest-$6,942-$6,942
All Other Expenses$2,485$158$828$3,471
Other Expenses$663$196$727$1,586
Total Functional Expenses$1,117,355$353,070$173,305$1,643,730

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$1,823,589
Total Expenses per Form 990$1,643,730
Expenses per Audited Statements$1,633,134
Expenses Not Reported on Form 990$190,455
Expenses Not Reported on Financial Statements$10,596
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
CHILDREN'S NATIONAL HEALTH SYSTEMWashington, DC501(c)(3)Research Grant$41,982
Brittle Bone Disorders ConsortiumHouston, TX501(c)(3)Research Grant$40,000
University of South FloridaTampa, FL501(c)(3)Research Grant$14,000
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$143,255
Fundraising Gross Income$0
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Dc Fine Wines Strong Bones$137,634-$8,001-
Strong Bones Houston$112,538-$2,917-
Total Events$504,729-$143,255$-143,255
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
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 - 2019”

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
804 W DIAMOND AVENUE NO 210, GAITHERSBURG, MD 20878

Signing Officer

Name
Tracy Smith Hart
Title
Chief Executive Officer
Phone
3019470083
Signed
2021-02-08
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
15
Volunteers
250

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 XI, 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 loss on disposal of assets -2,000. Reclassification of event expenses -143,255.”

PART XII, LINE 2D - OTHER ADJUSTMENTS:

“Reclassification of event expenses 143,255. Reclassification of loss on disposal of assets 2,000.”

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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. 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
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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/ProgramServiceRevenueGrp/Desc0CONFERENCE
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IRS990/ProgSrvcAccomActy2Grp/Desc0EDUCATION 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.
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IRS990/ProgSrvcAccomActy2Grp/GrantAmt0134308
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. 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).
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IRS990/ProgSrvcAccomActy3Grp/RevenueAmt0111077
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. NATIONAL OSTEOGENESIS IMPERFECTA AWARENESS WEEK 2020 TOOK PLACE ON MAY 2-9, 2020. VOLUNTEERS CONTACTED GOVERNMENT OFFICIALS TO PROCLAIM OI AWARENESS WEEK IN 24 CITIES AND STATES, RAISED MORE THAN $19,000 THROUGH FACEBOOK FUNDRAISERS, AND REACHED MORE THAN 200,000 PEOPLE ON SOCIAL MEDIA. THE OIF CELEBRATED WISHBONE DAY, THE INTERNATIONAL OI AWARENESS DAY, BY SHARING FACTS AND INFORMATION VIA SOCIAL MEDIA EVERY HOUR FOR A CONSECUTIVE TWELVE HOURS. THE OI FOUNDATION MANAGES THREE OFFICIAL SOCIAL NETWORKING SITES: THE OIF FACEBOOK PAGE FOLLOWED BY 13,000 FACEBOOK USERS; THE OI FOUNDATION TWITTER PAGE (@OIFOUNDATION) - FOLLOWED BY 2,554 TWITTER USERS, AND THE OIF INSTAGRAM PAGE (@OIFOUNDATION) - FOLLOWED BY 1,153 INSTAGRAM USERS. THE OI FORUM PAGE, A FACEBOOK GROUP WITH 10,800 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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IRS990/SavingsAndTempCashInvstGrp/EOYAmt0102435

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Filings

Displayed year

2020 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$1,745,584
Liabilities
$381,897
Net assets
$1,363,687
Revenue
$1,544,189
Expenses
$1,643,730
Net income
-$99,541
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
2023XML pending. An XML filing is linked for this year, but detailed extraction is still pending.$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
2020Detailed filing. Detailed filing data is available for this year.$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