We need YOUR help to proclaim National OI Awareness Week (May 6 – 13, 2023) in every state!
To request a proclamation in your state, follow the steps below.
- Click on your state below.
- Suggested Proclamation Request Language and Suggested Proclamation language are available here. If required, you may copy/paste this into your proclamation request form.
- When you receive your proclamation, please send an electronic version to firstname.lastname@example.org. If you did not receive an electronic version, please send a photo of the mailed proclamation.
If you have any questions, please contact Gabriela at email@example.com.
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.
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 firstname.lastname@example.org.
If you are interested in learning more about this trial and to see if you can participate you can reach out to email@example.com.
National OI Awareness Week is a week dedicated to raising awareness for OI and sharing your Unbreakable Spirit®. OI Awareness Week is scheduled around Wishbone Day (May 6), the international OI Awareness Day. Each year during National OI Awareness Week, OI community members request state proclamations, hang flyers, hold events, and share social media posts to raise OI awareness.