Osteogenesis Imperfecta Foundation

What it reported doing in 2024

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 c

Financial Efficiency

• Mission deployment rate: 87.4%; rating input score 87
• Program expense ratio: 77.5%; rating input score 78
• Fundraising efficiency: $10.37 raised per $1 spent on fundraising; rating input score 39; 39th percentile among comparable filings

Transparency & Controls

• Consistency checks: 94.1%; rating input score 94; 23rd percentile among comparable filings
• Pay-setting controls: 3 of 6 controls in place; rating input score 50
  • Compensation committee: Missing
  • Independent consultant: Missing
  • Other Form 990s reviewed: Missing
  • Written employment contract: Pass
  • Compensation survey or study: Pass
  • Board or committee approval: Pass
• Foreign activity oversight: Scored; rating input score 0
• Grant itemization coverage: 52.5%; rating input score 53; 16th percentile among comparable filings
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
• Governance controls: 9 of 9 controls in place; rating input score 100
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Pass
  • Document-retention policy: Pass
  • CEO compensation review process: Pass
  • Other executive compensation review process: Pass
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Pass
  • Independent financial-statement audit: Pass

Sustainability

• Operating margin: -0.7%; rating input score 30; 30th percentile among comparable filings
• Total-asset coverage ratio: 0.63; rating input score 23; 23rd percentile among comparable filings
• Liabilities to assets ratio: 0.18; rating input score 47; 47th percentile among comparable filings
• Officer compensation ratio: 14.8%; rating input score 19; 19th percentile among comparable filings

Growth

• Program expense growth: 8.3% per year; rating input score 100; 57th percentile among comparable filings
• Revenue growth: 7.1% per year; rating input score 100; 55th percentile among comparable filings
• Asset growth: 1% per year; rating input score 100; 16th percentile among comparable filings