OI Research Update: New Medical Treatments

On March 15, 2022, the OI Foundation spoke with Dr. Brendan Lee, Principal Investigator for the Brittle Bone Disease Consortium (BBDC). In this interview, they discussed new drugs being studied to treat osteogenesis imperfecta, and the drug development process. Watch the session recording below, or click here to view the recording on YouTube.

 

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:

  1. Gain a better understanding of all genetic forms of OI
  2. Expand treatment options for those with OI
  3. Help guide the next generation of physicians and scientists.

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.

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.

 

OIF Conference 2022

The 2022 OIF National Conference will be held virtually during the weekend of July 9, 2022.

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.