Category: Updates from the OIF

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

Dear Friend,

We talk a great deal about the mission of the OI Foundation: to improve the quality of life for all individuals living with osteogenesis imperfecta through research, education, awareness, and mutual support. But what does that mean? I’d like to give you a few examples of ways in which the OIF is there, not just for adults with OI and parents of children with OI, but also for spouses, extended family members, caregivers, medical professionals, and anyone who loves or cares for individuals with OI.

Please keep in mind, we cannot do any of this without you! The OIF relies on donations from individuals like yourself to make up 80% of the operating budget. Every little bit helps, and we are truly grateful for all support.

Research
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!

Education
For more than 50 years, the OIF has been proud to provide up-to-date, medically verified information and offer direct support from the OIF
Information Center which answers more than 11,000 inquiries annually. The OIF’s online information center features OIF publications and informational fact sheets including Navigating a New Diagnosis: A Tool Kit for Parents and Medical Professionals; What You Need to Know About
Clinical Trials; and Nutrition and OI (prepared by OI community member Mia Gould with Deborah McInerney, MS, RD, CDN). Coming in 2023, the
OIF will publish an Adult Tool Kit which is planned as an extended resource similar to the New Diagnosis Tool Kit, but will provide information for adults living with OI. Since March 2020, the OI Foundation has held dozens of virtual information sessions for members of the OI community, discussing topics such as COVID-19 updates, expert panels on living with OI, and research updates from the Brittle Bone Disorders Consortium. These video resources have joined the online information center as a resource to anyone who has questions – all available for free on the OIF’s website.

Awareness
Having medical professionals who are well-versed in OI is paramount when it comes to care for the OI community. To build a strong network of physicians who can provide the latest in medical advancements to their patients, the OIF has been bringing directors of bone health programs across the country together for biannual OI Clinic Town Hall meetings. These sessions allow for physicians to compare experiences with specific case studies to better serve the OI community. The OI Foundation has also partnered with 15 other rare bone disease patient advocacy groups to create the Rare Bone Disease Alliance. This partnership enables them to bring awareness of OI and other skeletal dysplasias to physicians and researchers around the world. In February 2023, the Rare Bone Disease Alliance will be hosting a virtual scientific symposium focused solely on OI.

Mutual Support
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.

As I mentioned above, the OI Foundation cannot do what they do without you! We hope you will consider making a gift of $50, $100, $500 or more to help us continue this vital mission. Use the enclosed envelope or go online to www.oif.org/donate to show your support today! Thank you again for your continued and generous support.

Wishing you a happy and healthy holiday season!

Ted Trahan

President, Osteogenesis Imperfecta Foundation Board of Directors

Locate Medical Care in Your Area – Physician Directory

The OIF Information Center maintains a list of medical professionals (ie. general physician, dentist, specialist) who have experience treating patients with osteogenesis imperfecta (OI). To locate care in your area, please email bonelink@oif.org.