Dear Friend,
As we near the end of 2022, we are taking a moment to reflect on the accomplishments of the OI Foundation this year. We are thankful for the generosity of individuals who have allowed the OI Foundation to continue providing programs and services that benefit all members of the OI community. Please consider helping the OI Foundation continue our efforts to improve the quality of life for individuals with OI by making an end of year contribution by visiting www.oif.org/donate. Thank you in advance for your support!
Eugene Washington PCORI Engagement Award
Under the direction of OIF Medical Advisory Council member Dr. Laura Tosi, the OI Foundation recently completed our 3rd Eugene Washington PCORI Engagement Awards, through the Patient-Centered Outcomes Research Institute (PCORI), Leveraging Virtual Communication to Advance PCOR Adoption by the Rare Bone Disease Community. This award brought together members of the Rare Bone Disease Alliance (RBDA) with stakeholders from the patient and scientific communities in a series of focus groups and large group meetings to examine barriers to participation in
research, barriers to access to care, and patient-identified issues that need to be reflected in the development of patient-reported outcomes. The OI Foundation is currently administering our latest award, Preparing Adults with Osteogenesis Imperfecta to Engage in Research on Access and Quality of Care for Their Rare Disease, which is exploring the problems that individuals with OI have as they transition from pediatric to adult care. Over the next year, we will be hosting more than 150 listening sessions with members of the OI Community, Clinicians, and other rare disease stakeholders to explore challenges a patient may encounter when seeking primary and specialty care, the difficulties pediatric OI clinics have as they seek to successfully transition their patients to adult care, and the barriers that existing adult OI clinics encounter as they seek to provide appropriate and high-quality care to adult patients.
Scientific Meeting
In April, the OI Foundation gathered 70 scientists and researchers specializing in OI research and treatment in person – with an additional 65 attending virtually – for a two-day session to discuss Scientific Advances in OI. This meeting is designed for scientists interested in learning more about the latest in basic and clinical OI research, and how the information could ultimately benefit people living with OI. This year’s meeting, chaired by Dr. Deborah Krakow, featured sessions on the musculoskeletal system, quality of life, stem cell research, cardiopulmonary issues, treatment beyond bisphosphonates and a look at what’s new on the horizon.
Virtual Education and Mutual Support Sessions
For the past three years, the OI Foundation has hosted more than 20 live, virtual sessions connecting OI community members with OI experts to discuss COVID-19 related topics, research updates, and mutual support opportunities. Sessions have included: three Virtual National Conferences; Information on COVID-19; Mental Health and Wellness; Nutrition and Fitness; Employment Accommodations; COVID-19 Vaccine Updates; Brittle Bone Disorders Consortium research updates; support groups, virtual holiday parties and so much more! The virtual sessions have allowed hundreds of new individuals who have not had the ability to attend in-person OIF events to participate in the most popular informational and social sessions. All OIF virtual sessions have been recorded and are available on the OI Foundation’s website and YouTube channel with certain key educational sessions being available in English, Spanish, and French.
Rare Bone Disease Alliance
The Rare Bone Disease Alliance (RBDA), a program of the OI Foundation, brings together a coalition of sixteen rare bone disease patient advocacy groups. The RBDA is committed to expanding education of rare and ultra-rare disorders and expanding research on the natural history, diagnosis, and treatment of the diseases. The RBDA unites researchers and early-stage investigators through a monthly TeleECHO Clinic Series that focuses on helping physicians, nurse practitioners, physician assistants and other healthcare professionals safely and effectively diagnose and treat rare bone diseases and disorders. The RBDA also hosts scientific symposia and working group meetings through associations such as the American Society for Bone and Mineral Research and the American Society of Human Genetics. In 2023, the RBDA will host a scientific symposium led by Dr. Eric Orwoll focused solely on osteogenesis imperfecta.
OI Clinic Outreach
In an ongoing effort to connect with medical professionals who are currently treating patients with OI and educate them on the resources the OIF provides clinics and their patients, the OIF has begun holding a biannual Town Hall Meeting for OI Clinic and Bone Health Programs with the first two events being held in April 2022 and November 2022. We were excited to gather medical professionals in person and virtually to connect and collaborate on the latest in OI treatments and patient care. We have created a new quarterly electronic newsletter specifically for this group, which includes important announcements about meetings and resources.
OIF National Information Center
This past year, OIF staff responded to more than 11,000 direct inquiries for medically verified information, and an average of 6,000 people used the OIF website each month. Topics range from medical issues such as genetics, diagnosis, and treatments to daily living strategies such as school and employment. Educational materials are available in print and electronically through the OIF website.
Social Networking
The OI Foundation manages three official social networking sites: the OIF Facebook Page – followed by 14,257 Facebook users; the OI Foundation Twitter page (@OIFoundation) – followed by 2,786 Twitter users, and the OIF Instagram page (@oifoundation) – followed by 1,804 Instagram users. This year the OIF YouTube channel highlighted virtual information sessions, COVID-19 community calls, and fundraising event recordings. A new playlist was created in honor of OI Foundation founder, Gemma Geisman, to share stories from OI community members. Gemma’s Corner encourages the OI community to keep sharing with each other, caring for each other, and providing support to one another.
Jeanie Coleman Impact Grants
In partnership with the Children’s Brittle Bone Foundation, the Jeanie Coleman Impact 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 limited financial resources. In 2022, the OIF was able to fund $136,509 worth of items and services for 18 families. The 2022 grants covered a range of items including: mobility assistive devices, car seats and ASL class. The next round of Impact Grant applications will open in January 2023.
With your help, the OI Foundation has accomplished so much over the years, but there is so much left to do. We cannot continue providing the programing and information members of the OI Community have come to rely on without your support!
We hope 2022 is a wonderful year for you and your family!
The Board of Directors and Staff of the Osteogenesis Imperfecta Foundation
The February E-Newsletter is here! Check out this issue to learn about grants for OI community members, the Pain and OI Survey, and upcoming OIF programs and events!
Have you read the latest issue of the OIF’s Breakthrough newsletter? 
The OIF continues to help accelerate OI research with industry partners and research organizations like the National Institutes of Health and the Rare Disease Clinical Research Network. More and more we are seeing how important it is to hear the voice of the OI community to help advance research and enhance programming. Through awards from the Patient Centered Outcomes Research Institute, the OI Foundation has been conducting a series of research studies to determine what issues are most impactful to the OI community. The results of these studies appear in the Research section of the OIF web site. Through the Brittle Bone Disorder Consortium, studies are being conducted on topics including new medical treatments for OI, the effects of aging with OI, quality of life with OI, pregnancy in OI, craniofacial development in OI, cardiopulmonary outcomes in OI, developing a non-invasive test to determine OI type and many more!
Sharing information and experiences with others offers a sense of community between spouses, extended family members, caregivers, and medical professionals as well as those living with OI. Coming together to greet friends while learning about the newest treatments and research is invaluable when living with a rare disorder. To that end, I am very excited to announce the return of in-person OI Foundation meetings and events! I had the pleasure of joining OI community members at the Regional Conference in Tampa this summer as well as at fundraising events such as the Boots & Bling for Better Bones in Houston this fall. Looking forward, the OIF will be hosting a Regional Conference in June 2023 in Washington, DC and another in Phoenix, AZ in September 2023. And of course, we’re all eagerly looking forward to the return of the OIF National Conference in Omaha in 2024. In addition to the OI Foundation’s social media pages, which link tens of thousands of OI community members across the globe, we are planning on bringing back OIF Support Groups to help create even more avenues for mutual support.
