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.

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.

OIF National Conference 2022 Update

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

Although we are disappointed not to be able to meet in person again this year, the safety of the OI community is our top priority. This decision was made in consideration of the feedback we received from the OI Foundation Board of Directors, Medical Advisory Council, and OI community members.

The OI Foundation hopes to host several smaller, in-person Regional Conferences around the country throughout this year. By hosting smaller, more targeted regional conferences, we can deliver educational resources to our community and still provide a safe environment for gathering. The regional conferences will begin this summer and the full schedule will be posted as details become available.

We thank you for your understanding and patience as we navigate these unusual times. We’ll release more details in the coming months, but please don’t hesitate to reach out if you have any questions. The OI Foundation can be reached by phone at (844) 889-7579 or by email at bonelink@oif.org.

OIF Research Update: Mental Health and OI

Thursday, November 18, 2021   |   6:00 PM

During this session, Dr. Reid Sutton (Geneticist at Baylor College of Medicine and OIF Medical Advisory Council member) and Dr. Eric Storch (Vice-Chair and Head of Psychology at Baylor College of Medicine) share their experience working with the OI community, outline the new study the BBDC is undertaking around mental health, and explain what they hope to learn. Click here to watch the recording of this session.

This session is the fourth 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!

Complete the OIF Conference Survey

Should the OIF hold an in-person Conference in July?

The OIF is still evaluating the possibility of holding an in-person 2022 National Conference in Orlando, Florida, and would like to hear if you would attend in-person. The safety and comfort of our community is very important to us, and your input helps us make the best planning decisions.

Please take a moment to complete the OIF’s Conference Survey at https://www.surveymonkey.com/r/Y8332ZT


OI Research Update: Dental Health

The Current State of OI Research: Dental Health and Orthodontics

Last week, Dr. Jean-Marc Retrouvey (Professor and Chair of the Department of Orthodontics and Dentofacial Orthopedics at the University of Missouri-Kansas City) and Tracy Hart (OIF CEO) joined OI community members to discuss current research in dental health and orthodontics. Watch the recording of this session above, or at https://youtu.be/iRfYoOpJf_k.

This session is the third 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.

___________________________________________________________________________________________________

The OI Foundation would like to bring your attention to a research study being conducted by the Brittle Bone Disorders Consortium.

The purpose of this study is to determine if it is safe to use Invisalign clear aligners in correcting the misalignment of teeth in people with OI. Clear aligners are transparent plastic trays that are designed to fit over your teeth. With each new tray, teeth are moved a little at a time until they reach the desired position. We plan to have approximately 57 people take part in this study.

For more information, please contact Dianne Nguyen (BBDC Project Manager) at (713)798-6694 or diannen@bcm.edu.