OI Canada
Order NEW OI awareness apparel from the OIF online store! With adult, youth, toddler, and infant sizes, there is something for everyone! Shop now at www.bonfire.com/store/oifstore.
To receive your order in time for Awareness Week (April 30 – May 7) and Wishbone Day (May 6), you must place your order by April 7, 2022.
This session is the fifth in a series meant to demystify and contextualize medical research from the Brittle Bone Disorders Consortium (BBDC). The BBDC is a multicenter initiative that focuses on understanding and providing better treatment options for osteogenesis imperfecta. The previous BBDC research updates can be viewed here
As a partner of the OIF, the BBDC has 3 major goals:
This series is intended for anyone who wants to learn more about OI medical research. We hope you will attend a future session!
New study results on drug treatment for OI published in Journal of Clinical Investigation
The study, “Targeting transforming growth factor- β (TGF-β) for treatment of osteogenesis imperfecta” was led by OIF MAC Member Dr. Brendan Lee of Baylor College of Medicine. Click here to learn more about this study.
March 14, 2022
While mask guidelines are being eased across the United States, the OI Foundation recommends, with guidance from our medical experts, that families and individuals with OI consider maintaining COVID-19 preventative measures like public mask wearing and social distancing beyond the lifting of mandates. Individuals with OI are still more likely to experience more severe symptoms from COVID-19. For more information on your community’s current COVID-19 level, please check the CDC’s county map for updates.
Additionally, mask wearing in public settings has proven benefits beyond COVID-19 prevention. Rates of influenza (flu) and all other lung infections have dramatically declined with the implementation of public mask mandates. Pulmonary complications are a leading cause of death for people with OI, so respiratory health preventative measures may be beneficial for many, even if COVID-19 is no longer a concern for the OI community.
The OI Foundation would like to bring your attention to a research study being conducted by Ultragenyx Pharmaceutical Inc:
The Ultragenyx Orbit clinical study is for individuals living with osteogenesis imperfecta (OI). The purpose of this study is to investigate the efficacy and safety of setrusumab in pediatric and young adult patients with OI Types I, III, or IV. Setrusumab is a monoclonal antibody being developed for the treatment of osteogenesis imperfecta (OI). Study participants are at least 5 but not yet 26 years of age, have a confirmed diagnosis of OI Types I, III, or IV, had at least one fracture in the past year or at least two fractures in the past 2 years, and are willing to not receive bisphosphonate therapy during the study. For more information, please click here, or reach out to trialrecruitment@ultragenyx.com.
If you are interested in learning more about this trial and to see if you can participate you can reach out to trialrecruitment@ultragenyx.org.
The 2022 Unbreakable Spirit® Walk-n-Wheel will be held on Friday, July 8, 2022.
The OI Foundation will host a full day of information sessions on Saturday, July 9, 2022.
This year’s virtual conference program will include a full day of information sessions led by experts in their respective fields in a question-and-answer styled format, similar to the Ask the Expert sessions from last year. The OI Foundation’s 2022 Virtual Conference agenda will feature information sessions including Navigating a New Diagnosis, OI Research Update, Mental Health, Cardiopulmonary and OI, Women’s Health, Dental Health, and (NEW!) Transition to Adult Care. Several information sessions will feature live translation to French and Spanish. Attendees will also have the opportunity to socialize with fellow participants at social sessions created for both adults and children.
The full conference agenda and registration will be available on the OIF website in May. This online program will be free of charge for all OI community members.
The 2022 Unbreakable Spirit® Walk-n-Wheel will be held on Friday, July 8, 2022. Grab your friends and family and create a walk-n-wheel team to raise awareness of OI and funds for the OI Foundation. For more information, visit www.oif.org/walknwheel2022.
OIF Regional Conferences
The OI Foundation will host several smaller, in-person Regional Conferences around the country throughout this year. By hosting smaller regional conferences, we can deliver educational resources to our community and still provide a safe environment for gathering. The first Regional Conference will be held on July 30th in Tampa, Florida. Stay tuned for more information!
To view session recordings from the 2021 OIF Virtual Conference, please click here.
Special OIF Office Hours Event: Impact Grants 101
Thursday, March 3 | 7:00pm ET
Join us for a special office hours event this Thursday to learn more about the Jeanie Coleman Impact Grant program and how you can apply!
Click here to register to attend.
Click here to register to attend.
