Month: August 2022

Dear Friend,

We are thankful for the generosity of community members who have supported the work of the Osteogenesis Imperfecta Foundation! We hope you will take a moment to read about the OIF’s exciting accomplishments of the past year and once again make a contribution to the OI Foundation. Your support allows us to continue adding to the many new and ongoing programs and activities as we strive to improve the quality of life for individuals living with OI through research, education, awareness, and mutual 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 a series of listening sessions to explore challenges a patient may encounter when seeking primary and specialty care, difficulties pediatric OI clinics have as they seek to successfully transition their patients to adult care, and barriers that existing adult OI clinics encounter as they seek to provide appropriate and high-quality care to adult patients.

Scientific Meeting
We were very excited to resume the OIF’s annual Science Meeting in April. 70 scientists and researchers specializing in OI research and treatment came together 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.

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 held a hybrid Town Hall Meeting for OI Clinic and Bone Health Programs in April. We were excited to gather 35 medical professionals in person with another 60 joining virtually for a half day of discussion on mental health, pain management, and pulmonary care. We have created a new quarterly electronic newsletter specifically for this group, which will include important announcements about meetings and resources.

Rare Bone Disease Alliance
The Rare Bone Disease Alliance (RBDA), a program of the OI Foundation, brings together a coalition of fifteen 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 by hosting an annual Rare Bone Disease Working Group Meeting, an Early-Stage Investigator Meeting, and a Scientific Symposium. Learn more at www.rbdalliance.org.

Virtual Education Sessions
Since March 2020, 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: Information on COVID-19; Mental Health and Wellness; Nutrition and Fitness; Employment Accommodations; COVID-19 Vaccine Updates; Brittle Bone Disorders Consortium research updates; virtual holiday parties and so much more! All OIF virtual sessions have been recorded and are available on the OI Foundation’s website and YouTube channel.

OIF Virtual Conference
For the past three years, the OIF has hosted a Virtual National Conference to help fill the gap between in-person OIF National Conferences. The virtual format has allowed hundreds of new individuals who have not had the ability to attend an in-person OIF National Conference to participate in the most popular informational and social sessions complete with closed captioning and live interpretation in both French and Spanish. In 2022, we utilized an “Ask the Expert” format to allow for a more informal dialogue between OI experts and virtual participants. Session recordings are available on the OI Foundation’s YouTube channel.

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. OIF Virtual Office Hours, every Tuesday and Thursday at noon and 6pm EST, are hosted by OIF Health Educator Jessica Ransome. Individuals are invited to join office hours via Zoom to learn more about OI Foundation programs and resources, ask questions, or just say hello.

Awareness Week
Each year during National OI Awareness Week, OI community members request state proclamations, host events, tell their story, and share social media posts to raise OI awareness. This year, during the week of April 30 – May 7, OIF social media posts reached nearly 100,000 people, we received 22 official National OI Awareness Week proclamations, and 25 OI community members created National OI Awareness Week Facebook Fundraisers. In addition, many individuals participated in Bone China Tea and DoubleGood Popcorn Fundraisers, as well as purchased OIF Unbreakable Spirit® apparel to help share their awareness.

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.

Your support plays a vital role in what we do, and we hope we can count on your continued generosity. Please consider using the enclosed envelope to make a gift of $50, $100 or more to the OI Foundation or go online at www.oif.org/donate to donate today!

Thank you, as always, for your continued support.
Tracy Hart
Chief Executive Officer
Osteogenesis Imperfecta Foundation