National OI Awareness Week is May 6-13!

National OI Awareness Week is May 6 – 13, 2023!

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.

How will YOU raise OI awareness this week?

Proclaim National OI Awareness Week 2023 in your State!

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.

  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. When you receive your proclamation, please send an electronic version to gbeug@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 Gabriela at gbeug@oif.org.

 

OI Research Update: Longitudinal Study

BBDC Research Update: Longitudinal Study

On September 22, 2022, the OI Foundation was joined by Dr. Reid Sutton (Geneticist at Baylor College of Medicine, Administrative Director and Principal Investigator of the Brittle Bone Disorders Consortium, and member of the OIF Medical Advisory Council and Board of Directors) to discuss the Longitudinal Study of Osteogenesis Imperfecta. This study, also known as the Natural History Study, is the largest research project ever conducted on people with OI. Dr. Sutton discussed the design of the study, its goals, and what researchers have learned so far. Watch this session recording below.


Participate in the Longitudinal Study of OI!
The purpose of this natural history study is to perform a long-term follow-up of a large group of people with osteogenesis imperfecta (OI). Information collected will include medical history, number of broken bones, surgeries done, medications taken, ability to walk, pain, lung function and breathing, hearing, and bone mineral density. The overall goal is to improve the health and quality of life of people with OI. Click here to learn more and determine if you are eligible to participate.

OIF Regional Conference: Kansas City, MO

Save the Date! OIF Regional Conference: Kansas City
Saturday, November 5, 2022
The OIF is excited to announce the next Regional Conference will be held in Kansas City, Missouri, on November 5! This 1-day meeting will be co-chaired by Dr. Eric Rush and Dr. Jean-Marc Retrouvey and will be held at the Embassy Suites by Hilton Kansas City Plaza. Speakers will present on topics related to understanding and treating OI and will address pediatric and adult health concerns. More information and registration will be available at www.oif.org/event/regionalkc.

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.