Form 990 for tax year 2024

Totals

Total revenue

$2,607,851

Total expenses

$2,627,305

Contributions and grants received

$2,137,240

Grants paid

$388,702

Program service revenue

$215,927

Investment income

$309,216

Other revenue

-$54,532

Total assets, end of year

$1,660,457

Total liabilities, end of year

$292,624

Net assets or fund balances, end of year

$1,367,833

Program services expenses (Part IX)

$2,037,443

Management and general expenses

$383,791

Fundraising expenses

$206,071

Program service expenses (Part III)

$2,037,443

Program services were 77.5% 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 · 2024

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

  Expenses $508,325 · Grants $215,021

• EDUCATION AND SUPPORT:ADULT HEALTH INITIATIVES - THE OIF CONTINUES TO PRIORITIZE OUR WORK TO BETTER UNDERSTAND THE IMPACT OF OI AS PEOPLE AGE, AND WAYS WE CAN BEST SERVE OUR ADULT COMMUNITY. IN ADDITION TO PRODUCING RESOURCES LIKE THE OI ADULT HEALTH TOOLKIT TO HELP OUR ADULT COMMUNITY MANAGE THEIR CARE, THE OIF PARTNERS WITH CLINICIANS, RESEARCHERS, AND OTHER RARE BONE DISEASE GROUPS TO CONTINUE TO LEARN MORE ABOUT HOW OI IMPACTS THE BODY AS A PERSON AGES AND IMPORTANT ISSUES FACING THE ADULT COMMUNITY LIKE THE TRANSITION OF CARE FROM PEDIATRIC TO ADULT CARE AND GAPS IN ADULT CARE. WORK CONTINUES ON THE OIF'S SOMEWHERE TO GO FOR ADULTS WITH CHILDHOOD-ONSET RARE DISEASE PROJECT, WHICH AIMS TO IDENTIFY AND ADDRESS THE CHALLENGES AND SOLUTIONS FOR TRANSITIONING PATIENTS FROM PEDIATRIC TO ADULT CARE, PARTICULARLY FOR THOSE WITH RARE AND COMPLEX HEALTH ISSUES. SUPPORT GROUP PROGRAM - COMMUNITY FEEDBACK HAS INDICATED A DESIRE FOR SUPPORT GROUPS TAILORED TO SPECIFIC DEMOGRAPHICS (E.G., WOMEN WITH OI, PARENTS OF CHILDREN WITH OI, TEENS, ETC.). THIS FEEDBACK HAS BEEN VOICED DURING REGIONAL SUPPORT GROUP MEETINGS, EITHER VERBALLY OR THROUGH CHAT, AS WELL AS OUTSIDE OF THESE MEETINGS THROUGH DIRECT INQUIRIES TO OIF STAFF. BASED ON THE DATA AND COMMUNITY FEEDBACK, THE OIF HAS DECIDED TO REVAMP THE PROGRAM BY TRANSITIONING TO AFFINITY GROUPS. THE OIF IS CONSIDERING ESTABLISHING GROUPS FOR WOMEN WITH OI, MEN WITH OI, PARENTS OF CHILDREN WITH OI, YOUNG ADULTS (AGES 18-30), AND INDIVIDUALS AGING WITH OI. THE OIF PLANS TO LAUNCHING THE AFFINITY SUPPORT GROUPS WITHIN THE NEXT FISCAL YEAR BY THE END OF 2025.TOOLKIT FOR SCHOOL-AGED FAMILIES - THE OIF HAS ALMOST COMPLETED THE FINAL DRAFT OF THE TOOLKIT FOR SCHOOL-AGED FAMILIES AND IS IN THE PROCESS OF SENDING OUT SPECIFIC SECTIONS FOR REVIEW AND FEEDBACK MEDICAL PROFESSIONAL AND COMMUNITY-MEMBERS. TOPICS INCLUDED IN THIS NEWEST RESOURCE COVER DAYCARE/AFTER-CARE PROGRAMS, EXTRACURRICULAR ACTIVITIES, NAVIGATING THE SCHOOL SYSTEM (IEP/504 PLANS, HOME AND HOSPITAL TEACHING, TRANSITIONS BETWEEN ELEMENTARY, MIDDLE, HIGH SCHOOL, AND COLLEGE), AND AGE-APPROPRIATE LANGUAGE, DEFINITIONS, ADVOCACY INFORMATION AND RESOURCES FOR EACH AGE GROUP. LIKE THE OIF'S EXISTING TOOLKITS ON ADULT HEALTH AND NAVIGATING A NEW DIAGNOSIS, THE SCHOOL AGE TOOLKIT WILL BE A COMPREHENSIVE BOOKLET, AVAILABLE ELECTRONICALLY AND IN-PRINT IN ENGLISH, SPANISH AND FRENCH, WITH INFORMATION FOR BOTH PATIENTS AND PROVIDERS. THESE INFORMATIONAL TOOLKITS ARE AN EFFECTIVE WAY FOR FAMILIES TO LEARN HOW TO BEST MANAGE AT ALL STAGES OF LIFE, AND ARE AN EASY RESOURCE TO SHARE WITH PROVIDERS, TEACHERS AND SCHOOLS. TO DATE, THE OI ADULT HEALTH AND THE NAVIGATING A NEW DIAGNOSIS TOOLKITS HAVE BEEN ACCESSED ELECTRONICALLY MORE THAN 21,000 TIMES AND THERE ARE MORE THAN 3,500 COPIES IN PRINT.YOUNG ADULT ENGAGEMENT - IN JANUARY AND FEBRUARY 2025, THE OIF INTERVIEWED AND HOSTED LISTENING SESSIONS WITH YOUNG ADULTS (18-30 YEARS OLD) WITH OI. THIS PROJECT BEGAN BECAUSE YOUNG ADULTS HAVE BEEN UNDERREPRESENTED AT PAST OIF EVENTS AND IN VIRTUAL PROGRAMS, AND WE WANTED TO LEARN MORE ABOUT THE NEEDS OF THIS GROUP AND THEIR PERCEPTIONS OF THE OIF. OVERALL, WE SPOKE WITH A TOTAL OF 9 YOUNG ADULTS OVER 2 WEEKS. IN THESE CONVERSATIONS, SOME TRENDS AND TAKEAWAYS EMERGED. EDWARD D. CRANSTON COLLEGE SCHOLARSHIP - THE EDWARD D. CRANSTON COLLEGE SCHOLARSHIP IS FOR STUDENTS WITH OSTEOGENESIS IMPERFECTA WHO ARE APPLYING TO OR HAVE BEEN ADMITTED TO A COLLEGE OR UNIVERSITY. APPLICANTS MUST ARTICULATE A NEED FOR SCHOLARSHIP ASSISTANCE TO MEET THEIR ACADEMIC GOALS, BE COMMITTED TO FULL-TIME COLLEGE ENROLLMENT, AND SHOW PROOF OF ENROLLMENT TO RECEIVE THE FUNDS. THE CURRENT CYCLE OPENED ON JANUARY 13TH AND WILL RUN THROUGH APRIL 14TH. THE REVIEW COMMITTEE WILL MEET IN MAY TO DISCUSS AND CHOOSE A RECIPIENT. ANGEL PACHECO, WHO IS ATTENDING THE UNIVERSITY OF NEW MEXICO, WAS THE RECIPIENT OF THE SCHOLARSHIP FOR THE 2024 CYCLE. ANGEL WAS SELECTED FROM NEARLY 30 APPLICANTS BY A COMMITTEE COMPRISED OF OI FOUNDATION BOARD OF DIRECTORS MEMBERS AND OI COMMUNITY MEMBERS. WE ARE PROUD TO SUPPORT ANGEL AS SHE MOVES FORWARD IN HER EDUCATION.CBBF/OIF JEANNE COLEMAN IMPACT GRANTS - IN PARTNERSHIP WITH THE CHILDREN'S BRITTLE BONE FOUNDATION, THE JEANIE COLEMAN IMPACT GRANT PROGRAM WAS DESIGNED TO PROVIDE FUNDING FOR ITEMS AND SERVICES THAT WILL SIGNIFICANTLY IMPROVE THE QUALITY OF LIFE FOR A PERSON WHO HAS OI AND LIMITED FINANCIAL RESOURCES. IN 2024, THE OI FOUNDATION AND CBBF WERE ABLE TO FUND $175,193 FOR 23 FAMILIES COVERING A RANGE OF ITEMS AND SERVICES INCLUDING (BUT NOT LIMITED TO) 2024 OIF NATIONAL CONFERENCE ATTENDANCE, WHEELCHAIR ACCESSIBLE VEHICLES, PHYSICAL THERAPY, BRACES, AND HEARING AIDS. THE 2025 CYCLE OPENED ON JANUARY 6TH AND CLOSED ON FEBRUARY 14TH. THE REVIEW COMMITTEE IS CURRENTLY WORKING TO RANK AND SCORE THE 65 APPLICATIONS RECEIVED AND WILL MEET IN THE FIRST WEEK OF APRIL TO DISCUSS AND CHOOSE RECIPIENTS.

  Expenses $897,262 · Grants $173,681

• NATIONAL AND REGIONAL CONFERENCES: NATIONAL CONFERENCE - THE NEXT OIF NATIONAL CONFERENCE WILL BE HELD ON JULY 23-26, 2026, AT THE ROSEN CENTER IN ORLANDO, FLORIDA. THE ROSEN CENTER HAS AN ASTOUNDING 69 ADA ROLL-IN SHOWER SLEEPING ROOMS. PLANNING FOR THE CONFERENCE HAS BEGUN WITH LISTENING SESSIONS FOR YOUNG ADULTS TO LEARN HOW THE OIF CAN BEST SERVE THEIR UNIQUE NEEDS. REGIONAL CONFERENCES - OIF REGIONAL CONFERENCES BRING INFORMATION TO LOCAL COMMUNITIES THROUGHOUT THE US AND CANADA. THE OIF HOSTS 3-4 REGIONAL CONFERENCES EACH YEAR. OIF REGIONAL CONFERENCES ARE ONE-DAY IN-PERSON MEETINGS HELD IN CITIES AROUND THE US MEANT TO HELP COMMUNITY MEMBERS BETTER UNDERSTAND AND TREAT OI. REGIONAL CONFERENCES OFFER AN INTIMATE IN-PERSON EDUCATIONAL EXPERIENCE THAN THE NATIONAL CONFERENCE AND HISTORICALLY HAVE ATTRACTED MORE DIVERSE AUDIENCES WITH LESS EXPOSURE TO THE OIF'S PROGRAMS AND EVENTS. EACH MEETING DRAWS ABOUT 100 ATTENDEES, MOST OF WHOM HAVE NEVER ATTENDED AN OIF EVENT BEFORE. IN THE LAST YEAR, THE OIF HOSTED REGIONAL CONFERENCES IN ATLANTA, GA, DENVER, CO AND PORTLAND, OR.

  Expenses $407,863 · Revenue $215,927

• Expenses $223,993 · Revenue $44,288

As filed on the 2024 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

• THE REGENTS OF THE UNIVERSITY CALIFORNIA LOS ANGELES

  $50,000

  FELLOWSHIP GRANT

• BOSTON CHILDREN'S HOSPITAL

  $50,000

  FELLOWSHIP GRANT

• UNIVERSITY OF SOUTH FLORIDA

  $25,000

  CONTACT REGISTRY

Provenance

Return type

form_990

Tax year

2024

Filed

29 January 2026

IRS schema version

2024v5.5

Source object

202600619349301250

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