Breakthrough Newsletter: Spring 2022

 

Have you read the latest issue of the OIF’s Breakthrough newsletter? 

In this issue:

  • OIF National/Regional Conferences
  • National OI Awareness Week
  • OIF Programs for Medical Professionals
  • A letter from OIF Board of Directors President, Cameron Penn
  • Upcoming Events
  • COVID-19 Survey Results

CLICK HERE TO READ THIS ISSUE

 


 

OIF Mask Recommendations

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.

Research Announcement: ORBIT Study

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.


 

Proclaim National OI Awareness Week 2022 in your State!

We need YOUR help to proclaim National OI Awareness Week (April 30-May 7, 2022) in every state!

To request a proclamation in your state, follow the steps below.

  1. Click on your state below.
  2. Suggested Proclamation Request Language and Suggested Proclamation language are available here. If required, you may copy/paste this into your proclamation request form.
  3. Once you have submitted the request, notify Christina at cteufert@oif.org. Please include your name and the state you submitted a proclamation request for.
  4. When you receive your proclamation, please send an electronic version to cteufert@oif.org. If you did not receive an electronic version, please send a photo of the mailed proclamation.

Alabama
Alaska

Arizona
Arkansas
California
Colorado
Connecticut
Delaware
Florida
Georgia

Hawaii
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Maine
Maryland

Michigan
Minnesota
Mississippi
Missouri
Montana
Nebraska
Nevada
New Hampshire
New Jersey
New Mexico

New York
North Carolina
North Dakota
Ohio
Oklahoma
Oregon
Pennsylvania
Rhode Island
South Carolina

South Dakota
Tennessee
Texas
Utah
Vermont
Virginia
Washington
Washington, DC
West Virginia
Wisconsin
Wyoming

If you have any questions, please contact Christina at cteufert@oif.org.