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2025 Accomplishments
Dear Friend,
As 2025 comes to an end, the year has proved to be one of excitement and progress for the Osteogenesis Imperfecta Foundation! This is thanks to the generosity of individuals who have allowed the OI Foundation to continue providing programs and services that benefit all members of the OI community. From celebrating our 55th Anniversary, to supporting new research initiatives to providing programs that stretched our reach internationally, we hope you will take a moment to read about some of our most exciting accomplishments over the past year as we strive to improve the quality of life for individuals living with OI through research, education, awareness, and mutual support.
Thank you in advance for your support!
Research Fund
Our Research Fund was launched as a focused effort to raise new funds to ensure the continued support of our essential research priorities. The Foundation’s mission is to improve the quality of life for people affected by OI through research, education, awareness, and mutual support, and while programming makes up 80% of our total spending at the OIF, the OI Foundation is working to fill funding gaps in OI research to continue the current aggressive pace of research that is helping to find new treatments.
Since its launch earlier this year, the fund has focused on priorities such as the Michael Geisman Fellowship Grant, Expert Consensus Meetings, Adult Care Initiative, the Annual OIF Scientific Meeting, and Clinical Research Sites of the Brittle Bone Disorders Consortium, among several others. If you’d like to make a gift to support these efforts, donors may designate gifts towards a particular research priority or make their gift an unrestricted research donation.
Medics on the March
This summer, the OI Foundation joined physicians from the United Kingdom & Europe on a more than 57-mile hike along Scotland’s Fife Coastal Path in honor of the Brittle Bone Society’s 57th anniversary. Dr. Jeanne Franzone from Nemours AI Dupont Hospital, Dr. Reid Sutton from Texas Children’s Hospital, Dr. Maegen Wallace from Phoenix Children’s Hospital, and Dr. Peter Smith from Shriners Children’s Chicago, all represented the OI Foundation during the 3-day journey and worked tirelessly to help us pass our fundraising goal of $50,000. All four doctors participated in this event back in 2019 in honor of the OI Foundation’s 50th anniversary and were excited to tackle a new terrain this time around. This event was especially significant as it helped strengthen the OI Foundation’s relationships with partners across the ocean.
55th Anniversary
This year marked the OIF’s 55th anniversary, and to help us celebrate this exciting milestone, we launched the OIF’s 55th Birthday Challenge! This campaign allowed the OI community to celebrate advancements in research, community outreach, and education surrounding osteogenesis imperfecta. With continued efforts from both our medical professionals and OI community members, we have continued to make great strides in improving the quality of life for those living with osteogenesis imperfecta. From bringing together support groups to expanding resources, the OI Foundation provides quality support services to more than 10,000 people each year. We are thrilled to celebrate 55 years of impact, community, and unwavering commitment to our mission—thanks to supporters like you! Here’s to 55 years, and many more to come. You can still leave your birthday message and find resources to share! Visit www.oif.org/55anniversary for more information.
OIF Regional Conferences
This past year, the OIF hosted three Regional Conferences in Atlanta, GA, Denver, CO, and Portland, OR. Nearly 100 OI community members and medical professionals attended each meeting to connect and discuss a range of OI related topics. Topics at the events included pain management, treatment options for adults and children, physical therapy, orthopedics, dental issues, and more.
Coming in 2026, the OIF National Conference will be taking place July 24 – 26 in Orlando, FL. Check out www.oif.org/conferences to keep up to date with upcoming announcements.
The Washington, DC Metabolic & Rare Bone Disease Club
In our continued effort to expand our reach in research and engage with new clinicians, the OI Foundation has continued our work with the Rare Bone Disease Alliance. New this year, we have created a Metabolic and Rare Bone Disease Club that features a series of quarterly dinners focused on new developments in research, diagnosis, and treatment of metabolic and rare bone disorders. The goal of the Washington, DC Metabolic & Rare Bone Disease Club is to bring together endocrinologists, rheumatologists, geneticists and orthopedic surgeons with easy access to innovative and robust data as well as to help them expand their professional relationships across the varied disciplines.
These quarterly dinners have hosted over 150 people so far and continue to grow in popularity. This program strives to bring medical professionals together in this rapidly changing field, as we seek to grow the community of clinicians focused on improving care for these thought-provoking disorders. We are excited to see this club grow in the years to come!
ASBMR Annual Meeting
The American Society of Bone and Mineral Research Annual Meeting was held this September in Seattle, WA, and is the world’s largest and most diverse meeting in the bone and mineral research field. This conference attracts more than 2,500 attendees representing all career levels and specializing in a variety of disciplines. During the meeting, the OI Foundation was represented at the Rare Bone Disease pre-meeting and at the Rare Bone Disease Alliance’s Early and Mid-Career Investigator Reception. Attendees learned about the latest in research and connected with others interested in rare bone disease research, treatments, and disease management. We were honored to attend the conference and connect with clinicians and researchers from all over the world!
As you can see, your support plays a vital role in what we do, and we hope we can count on your continued generosity. It is not too late to make your tax-deductible donation. The OIF also accepts gifts of stock and is available to work with your financial advisor on making a gift from your donor advised fund. Please consider making a gift of $50, $100, $500 or more to the OI Foundation using the enclosed envelope, or online at www.oif.org/donate.
Thank you, as always, for your continued support.
All my best,
Tracy Smith Hart
Chief Executive Officer
Osteogenesis Imperfecta Foundation
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