Form 990 for tax year 2022

Totals

Total revenue

$2,214,512

Total expenses

$2,085,298

Contributions and grants received

$2,159,567

Grants paid

$399,037

Program service revenue

$0

Investment income

$50,847

Other revenue

$4,098

Total assets, end of year

$2,346,165

Total liabilities, end of year

$670,918

Net assets or fund balances, end of year

$1,675,247

Program services expenses (Part IX)

$1,627,739

Management and general expenses

$366,670

Fundraising expenses

$90,889

Program service expenses (Part III)

$1,627,739

Program services were 78.1% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2022

• Withheld by Nonprofiteer: this text may name a private individual.

  Expenses $606,591 · Grants $281,386

• EDUCATION 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.

  Expenses $702,453 · Grants $117,479

• OIF 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.

  Expenses $176,641 · Grants $172

• PUBLIC 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.

  Expenses $142,054 · Revenue $37,444

As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here. A text marked withheld matched a screen for wording that may name a private individual, such as an honorific or "in memory of". Most of what it withholds names no one; it is withheld so that what does is never shown.

Listed in Part VII

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

• UNIVERSITY OF SOUTH FLORIDA

  $69,940

  CONTACT REGISTRY

• BAYLOR COLLEGE OF MEDICINE

  $50,000

  RESEARCH GRANT

• UNIVERSITY OF CALIFORNIA - LOS ANGELES

  $50,000

  RESEARCH GRANT

• BOSTON CHILDREN'S HOSPITAL

  $50,000

  RESEARCH GRANT

• PHOENIX CHILDREN'S HOSPITAL FOUNDATION

  $25,000

  RESEARCH GRANT

Provenance

Return type

form_990

Tax year

2022

Filed

14 February 2024

IRS schema version

2022v5.0

Source object

202440459349301729

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