Civic Intelligence

Osteogenesis Imperfecta Foundation Inc.

990 • Fiscal year 2019 • EIN 23-7076021

Jul 01, 2018 to Jun 30, 2019 • Filed on Mar 25, 2020

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

60th percentile

0.15x

Higher debt load relative to assets than 60% of similar nonprofits.

2019 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2019

Liabilities / Revenue

60th percentile

0.15x

Higher debt load relative to revenue than 60% of similar nonprofits.

2019 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2019

Net Margin

16th percentile

-15%

Higher net margin than 16% of similar nonprofits.

2019 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2019

Top Officer Pay

91st percentile

$213,408

Higher top officer pay than 91% of similar nonprofits.

Top officer pay equals 11.6% of source-year revenue.

2019 filings • 501(c)3 • $1M-$5M nonprofits • Source year 2019

Asset Growth

Score unavailable

No value available

No earlier valid filing was available within the previous three public years.

Source year 2019

Revenue Growth

Score unavailable

No value available

No earlier valid filing was available within the previous three public years.

Source year 2019

Balance Sheet
Liabilities / Assets60th percentile

Assets

$1,768,258

No earlier filing loaded for comparison.

Net Assets

$1,496,703

No earlier filing loaded for comparison.

Liabilities

$271,555

No earlier filing loaded for comparison.

Revenue And Expenses
Liabilities / Revenue60th percentileNet Margin16th percentile

Revenue

$1,835,341

No earlier filing loaded for comparison.

Expenses

$2,109,750

No earlier filing loaded for comparison.

Net Income

-$274,409

No earlier filing loaded for comparison.

Historical Trend

Balance Sheet Trend

Asset GrowthScore unavailable

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

2019

Assets$1,768,258
Liabilities$271,555
Net Assets$1,496,703
Open 2019 Filing

Operations Trend

Revenue GrowthScore unavailable

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

2019

Revenue$1,835,341
Expenses$2,109,750
Net Income-$274,409
Open 2019 Filing
Jump To
Filing Snapshot
Filing Period
Jul 1, 2018 to Jun 30, 2019
Signed
Mar 25, 2020
Return Version
2018v3.1
Gross Receipts
$2,266,569
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.

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.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$1,420,941$1,348,450▼ $72,491
Savings and Temporary Cash Investments$131,252$118,528▼ $12,724
Pledges and Grants Receivable$230,652$101,119▼ $129,533
Accounts Receivable$135,577$60,167▼ $75,410
Land, Buildings, and Equipment, Net$22,846$36,940▲ $14,094
Prepaid Expenses and Deferred Charges$49,398$35,514▼ $13,884
Cash and Non-Interest-Bearing Accounts$257,736$29,303▼ $228,433
Inventories for Sale or Use$16,811$13,212▼ $3,599
Loans From Officers Directors-$0-
Total Assets$2,287,475$1,768,258▼ $519,217
Other Assets Total$22,262$25,025▲ $2,763
Liabilities
Grants Payable$239,500$161,826▼ $77,674
Accounts Payable and Accrued Expenses$75,402$95,526▲ $20,124
Deferred Revenue$117,805$14,145▼ $103,660
Other Liabilities$15,289$58▼ $15,231
Total Liabilities$447,996$271,555▼ $176,441
Net Assets / Fund Balance
Unrestricted Net Assets$795,225$782,895▼ $12,330
Temporarily Rstr Net Assets$1,005,266$713,808▼ $291,458
Permanently Rstr Net Assets$38,988$0▼ $38,988
Total Net Assets Fund Balance$1,839,479$1,496,703▼ $342,776
Total Liabilities and Net Assets / Fund Balance$2,287,475$1,768,258▼ $519,217

Asset Categories

AssetBook ValueDepreciationBasis
Other Land Buildings$28,505$101,391$129,896
Equipment$8,435$21,087$29,522
Compensation and Service Providers
Top Officer Pay91st percentile

Employees

NameTitleFull / Part TimeBaseOtherTotal
Tracy Smith HartChief Executive OfficerFT$183,382$30,026$213,408
Marcial T CostanzoDirector of FinanceFT$113,085$5,634$118,719

Board Members and Trustees

NameTitle
Francis Glorieux Oc Md PhdChairman - Medical Advisory Committee
Kenneth W Gudek SrPresident
Cameron R PennFirst Vice President
Brett EisenbergBoard Member
Christine RossiBoard Member
Eric GouldBoard Member
Joe HallBoard Member
Ken FinkelBoard Member
Laura Tosi MdBoard Member
Michele BurkaBoard Member
S Jacinta WhyteBoard Member
Sharon MutnickBoard Member
Kara B Ayers PhdSecretary
Ted TrahanTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$1,659,231
Program Service Revenue
$0
Investment Income
$177,183
Other Revenue
$-1,073
All Other Contributions
$1,046,318
Change in Net Assets
$-274,409

Audited Revenue Reconciliation

Revenue per Audited Statements
$1,824,087
Revenue Not Reported on Financial Statements
$11,254
Revenue Not Reported on Form 990
$182,960
Other Revenue Adjustments
$11,254
Total Revenue per Audited Statements
$2,007,047
Total Revenue per Form 990
$1,835,341
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$964,609
Other Expenses$780,309
Grants and Similar Amounts Paid$364,832
Total Fundraising Expense$219,207
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$281,905$225,024$115,777$622,706
Conferences and Meetings$387,690$5,319$315$393,324
Grants to Domestic Orgs$279,342--$279,342
Current Officers, Directors, Trustees, and Key Employees$185,905$28,220$4,578$218,703
Grants to Domestic Individuals$85,490--$85,490
Occupancy$42,659$24,733$11,527$78,919
Information Technology$52,151$7,180$3,941$63,272
Payroll Taxes$31,953$18,079$9,558$59,590
Office Expenses$29,475$10,029$17,758$57,262
Other Employee Benefits$28,013-$17,855$45,868
Fees for Service Investment Mgmnt Fees-$42,697$32$42,729
Fees for Services Accounting-$34,235-$34,235
Fees for Services Other$25,260$1,823$3,748$30,831
Travel$2,774$223$16,521$19,518
Pension Plan Contributions$7,942$5,965$3,835$17,742
Depreciation Depletion$6,219$3,606$1,681$11,506
Insurance$2,262$1,380$4,121$7,763
Interest-$7,040-$7,040
All Other Expenses$4,511$23$11$4,545
Other Expenses$51$3,000$7,949$3,000
Total Functional Expenses$1,471,938$418,605$219,207$2,109,750

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$2,349,823
Total Expenses per Form 990$2,109,750
Expenses per Audited Statements$2,098,496
Expenses Not Reported on Form 990$251,327
Expenses Not Reported on Financial Statements$11,254
Other Expense Adjustments$11,254
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of Nebraska Medical CenterOmaha, NE501c3Research Grant$59,815
CHILDREN'S NATIONAL HEALTH SYSTEMWashington, DC501c3Research Grant$50,000
Duke University School of MedicineDurham, NC501c3Research Grant$50,000
NichdBethesda, MD501c3Research Grant$50,000
Hospital for Special SurgeryNew York, NY501c3Research Grant$25,000
Shriners Hospitals for ChildrenTampa, FL501c3Research Grant$25,000
Alfred I Dupont Hospital for Children of the Nemours FndWilmington, DE501c3Research Grant$10,000
Hugo W Moser Research Institute at Kennedy Krieger IncBaltimore, MD501c3Research Grant$8,500
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$204,250
Fundraising Gross Income$204,250
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Fine Wines Stong Bones Dc$132,467$48,884$48,884$0
Strong Bones Houston$100,973$36,868$36,868$0
Total Events$697,343$204,250$204,250$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Insider Transactions and Loans

Loans and Receivables

Line ItemBeginningEndChange
Loans from Officers, Directors, Trustees, and Key Employees-$0-
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Deferred Rent$58
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
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
No
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 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 committee meeting.”

Form 990, Part VI, Section B, Line 15A

“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 year of most recent review/approval cheif executive officer 2018”

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 their website.”

Filing and Contact Details

Filer

Filer Name
Osteogenesis Imperfecta Foundation Inc
EIN
23-7076021
Phone
3019470083
Address
804 W DIAMOND AVENUE NO 210, GAITHERSBURG, MD 20878

Signing Officer

Name
Tracy Hart
Title
CEO
Phone
3019470083
Signed
2020-03-25
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Tracy Hart
Formed
1970
Legal Domicile
Ga
Voting Board Members
14
Independent Board Members
13
Employees
12
Volunteers
300

Preparer

Firm
Thompson Greenspon
Address
4035 RIDGE TOP RD SUITE 700, FAIRFAX, VA 22030
Preparer
Charles F Helme Iii CPA
Phone
7033858888
Supplemental Narrative

Additional Explanations

FORM 990, PART XI, LINE 2C:

“No changes from the prior year.”

Financial Statement Notes

PART X, LINE 2:

“The foundation has no uncertain tax positions that qualify for either recognition or disclosure in the financial statements, and no interest and penalities have been recorded in the accompanying financial statements related to uncertain tax positions.”

PART XI, LINE 2D - OTHER ADJUSTMENTS:

“Special event expenses 204,250.”

PART XI, LINE 4B - OTHER ADJUSTMENTS:

“Investment expense 11,254.”

PART XII, LINE 2D - OTHER ADJUSTMENTS:

“Special event expenses 204,250.”

PART XII, LINE 4B - OTHER ADJUSTMENTS:

“Investment expense 11,254.”

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IRS990/ActivityOrMissionDesc0OUR 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.
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IRS990/Desc0THE 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.
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IRS990/Form990PartVIISectionAGrp/TitleTxt1PRESIDENT
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IRS990/Form990PartVIISectionAGrp/TitleTxt3TREASURER
IRS990/Form990PartVIISectionAGrp/TitleTxt4SECRETARY
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IRS990/Form990PartVIISectionAGrp/TitleTxt6BOARD MEMBER
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IRS990/Form990PartVIISectionAGrp/TitleTxt8BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt9BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt10FIRST VICE PRESIDENT
IRS990/Form990PartVIISectionAGrp/TitleTxt11CHAIRMAN - MEDICAL ADVISORY COMMITTEE
IRS990/Form990PartVIISectionAGrp/TitleTxt12BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt13BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt14CHIEF EXECUTIVE OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt15DIRECTOR OF FINANCE
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IRS990/MissionDesc0TO 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.
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IRS990/ProgSrvcAccomActy2Grp/Desc0THE 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, FAX, 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 QUARTERLY 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. ON AVERAGE, 40,000 PEOPLE USE THE WEBSITE EACH MONTH. FOUNDATION STAFF AND VOLUNTEERS RESPOND TO MORE THAN 7,500 DIRECT INQUIRIES A YEAR. INFORMATION FROM THESE CONTACTS IS USED TO ASSESS THE NEED FOR NEW RESOURCES. 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. IN ADDITION, 26 VOLUNTEER RESOURCE PEOPLE ARE ACTIVE IN 25 STATES.
IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt0455477
IRS990/ProgSrvcAccomActy2Grp/GrantAmt0136040
IRS990/ProgSrvcAccomActy3Grp/Desc0OIF 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, AND 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 2019 WAS MAY 4-11, 2019. VOLUNTEERS PROCLAIMED OI AWARENESS WEEK IN OVER 13 CITIES AND STATES, AND HELD MULTIPLE EVENTS NATIONWIDE. OIF CELEBRATED WISHBONE DAY, THE INTERNATIONAL OI AWARENESS DAY, BY SHARING FACTS AND INFORMATION VIA SOCIAL MEDIA EVERY HOUR FOR A CONSECUTIVE TWELVE HOURS. DURING OI AWARENESS WEEK 2019, OIF REACHED MORE THAN 200,000 PEOPLE ON FACEBOOK AND GAINED MORE THAN 100 NEW FACEBOOK FOLLOWERS.OIF MANAGES FOUR SOCIAL NETWORKING SITES AND CONTINUES TO OFFER, THROUGH ITS WEBSITE WWW.OIF.ORG, LINKS TO SITES THAT MIGHT BE HELPFUL OR INTERESTING TO PARENTS AND YOUNG PEOPLE LIVING WITH OI, IN ADDITION TO SITES THAT HELP OLDER ADULTS WITH OI MANAGE THEIR DISORDER THROUGHOUT THEIR LIFE THROUGH MUTUAL SUPPORT. THE FOUNDATION ALSO MAINTAINS AN OFFICIAL OIF FACEBOOK PAGE THAT PROVIDES INFORMATION AND RESOURCES TO ALL AGES AND IS UPDATED DAILY. CURRENTLY, THE OIF FACEBOOK PAGE HAS 12,429 FOLLOWERS.THE FOUNDATION IS COMMITTED TO ADVOCATING ON BEHALF OF PEOPLE WITH OI. 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/ProgSrvcAccomActyOtherGrp/Desc0THE FOUNDATION'S PRINCIPAL EDUCATIONAL EVENT IS THE BIENNIAL NATIONAL CONFERENCE ON OI. THE CONFERENCE BRINGS TOGETHER ADULTS WHO HAVE OI, PARENTS, OTHER FAMILY MEMBERS AND LEADING MEDICAL EXPERTS. THIS 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 2018, THE FOUNDATION HELD ITS 21ST BIENNIAL NATIONAL CONFERENCE IN BALTIMORE, MARYLAND, BRINGING TOGETHER 25 WORLD-CLASS EXPERTS ON OI AND MORE THAN 600 INDIVIDUALS LIVING WITH OI FOR THREE DAYS OF INFORMATION, MUTUAL SUPPORT AND FUN. THE CONFERENCE BEGAN WITH OIF'S THIRD ANNUAL NATIONAL WALK-N-WHEEL FOR OI EVENT THAT DREW MORE THAN 200 WALKERS AND WHEELERS SHOWING THEIR UNBREAKABLE SPIRIT TO THE BALTIMORE NATIONAL AQUARIUM. LOCAL VOLUNTEERS AND PARTNER ORGANIZATIONS, LIKE THE DEGNA SPOLDI FAMILY FOUNDATION, UNIVERSITY OF KENTUCKY HEALTHCARE, AND MEREO BIOPHARMA HELPED MAKE THE EVENT A TRUE SUCCESS. THE NEXT CONFERENCE WILL BE HELD IN JULY 2020 IN OMAHA, NEBRASKA.SINCE ITS LAUNCH IN 2015, OIF'S REGIONAL CONFERENCE PROGRAM HAS REACHED MORE THAN 1,200 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 2019, THE FOUNDATION HELD TWO REGIONAL CONFERENCES - ONE IN LOS ANGELES IN NOVEMBER 2018 THAT ATTRACTED MORE THAN 120 PEOPLE, AND ONE IN CHICAGO IN APRIL 2019 THAT ATTRACTED MORE THAN 100 PEOPLE.
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Filings

Displayed year

2019 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$1,768,258
Liabilities
$271,555
Net assets
$1,496,703
Revenue
$1,835,341
Expenses
$2,109,750
Net income
-$274,409
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
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
2019Detailed filing. Detailed filing data is available for this year.$1.77$0.27$1.50$1.84$2.11$0.27