OI Research Announcement: Use of clear aligners…

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.


 

Research Updates for the OI Community

More research into OI is being done than ever before, and the complex findings and breakthroughs can be hard to understand. On Wishbone Day (May 6), the OIF launched an educational series to highlight and explain the work of the Brittle Bone Disorders Consortium (BBDC).

In the Current State of OI Research: An Update for the OI Community, Cameron Penn (President of the OIF Board of Directors) and Brendan Lee MD, PhD (Principal Investigator of the BBDC and OIF Medical Advisory Council Member) discussed the work of the BBDC and the landscape of OI research.


The second video in this series, Women’s Health and Pregnancy, was held on June 24 with Deborah Krakow, MD (OIF MAC member and Professor and Chair of Obstetrics and Gynecology at UCLA) and Tracy Hart (OIF CEO).

In both talks, the researchers emphasized the importance of the BBDC, how they approach researching OI, and the big questions they seek to answer. To view session recordings, please visit the OIF website (Video Resources page) or OIF YouTube channel.

 

We Need to Hear from YOU!

Dear OI Community Member,

The IMPACT Survey is an international survey aimed at capturing and quantifying the real impact OI has on people’s lives to enable better diagnosis, treatment and care, and to support availability of potential future treatments for OI. The results from this survey will be used to enable better healthcare services for both children and adults and to support availability of potential future treatments for OI.

If you have OI, or are a parent/caregiver of a child with OI, we need to hear from you! Make an IMPACT on the future of OI research by completing the first-ever GLOBAL OI survey at: www.impactsurveyoi.com

If you began taking the Impact Survey but did not complete it, please be sure to return to the website to fully complete and submit the survey.

Please take a look at the flyer below for more information. If you have any questions, please contact the OI Foundation at bonelink@oif.org.

Thank you so much for your participation!

 

Research Update Session: Women’s Health and Pregnancy

Join the OIF for a Research Update on Women’s Health and Pregnancy

OI community members joined the OIF for a conversation with Dr. Deborah Krakow, OIF Medical Advisory Council (MAC) member and Professor and Chair of Obstetrics and Gynecology at UCLA, and Tracy Hart, OIF CEO, to discuss current research in women’s health and pregnancy.

The Brittle Bone Disorders Consortium (BBDC) is a multicenter initiative that focuses on understanding and providing better treatment options for osteogenesis imperfecta. The first BBDC update with Dr. Brendan Lee and Cameron Penn 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.

Make an IMPACT on the Future of OI Research! Complete the Impact Survey Today

We’re delighted to announce that The IMPACT Survey is now LIVE and will be open until September 10, 2021!

The IMPACT Survey is an international survey aimed at capturing and quantifying the real impact OI has on people’s lives to enable better diagnosis, treatment and care, and to support availability of potential future treatments for OI. The results from this survey will be used to enable better healthcare services for both children and adults and to support availability of potential future treatments for OI.
If you have OI, or are a parent/caregiver of a child with OI, we want to hear from you! Make an IMPACT on the future of OI research by completing the first-ever GLOBAL OI survey at: www.impactsurveyoi.com

The IMPACT Survey is a joint research project between the Osteogenesis Imperfecta Foundation, Osteogenesis Imperfecta Federation Europe and the pharmaceutical company Mereo BioPharma.

The Current State of OI Research: An Update for the OI Community

On Wishbone Day, Cameron Penn (President of the OIF Board of Directors) interviewed Dr. Brendan Lee (Principal Investigator for the Brittle Bone Disease Consortium (BBDC)). During this session, they discussed the history of the BBDC and current OI research, as well as answered audience questions. Watch this recorded session at https://youtu.be/UU-B7XCM45E.
More information on osteogenesis imperfecta (OI), the OIF, and the BDDC can be found at www.oif.org.

Reflecting on 50 Years – A Letter from Gemma Geisman

To prepare for the OIF’s 50th anniversary, OIF Founder Gemma Geisman wrote a beautiful letter reflecting on the OI Foundation’s accomplishments and activities since 1970. Her daughter, Cathy, shared this letter with the OI community in Gemma’s Corner
Gemma was creative, passionate, and a wonderful listener. She listened to learn about you, she listened to find out how to help you, and she listened because she cared about you.
 
Gemma’s Corner, created in memory of Gemma, encourages the OI community to keep sharing with each other, caring for each other, and providing support to one another.
 
For more information, or to share your story, please contact Jessica at jransome@oif.org.

What A Year!

Dear Friend,

As we near the end of 2020, we are taking a moment to reflect on what has certainly been a historic year. We are thankful for the generosity of individuals like you that allows the OI Foundation to continue providing programs and services that benefit all members of the OI community. We have worked hard to pivot and expand our programs to meet the needs of the OI community during this global crisis and want to share a few of our accomplishments this year. Please click here to view the OIF’s list of accomplishments.

If you have not had the chance to remember us with a gift this time of year, please take a moment to do so at  www.oif.org/donate. Thank you again for your support!

COVID-19 Survey Results

Thank you to the 199 community members who filled out OIF’s COVID-19 survey to help us better understand how the COVID-19 pandemic is affecting families and individuals living with OI. Your responses will help shape future OIF programs.

Important Findings:

  • A large portion of the OI community has become less active. Health advocates believe that “movement is life.” Therefore, the OIF will provide new opportunities to encourage OI-appropriate exercises and activities.
  • The OIF recommends that community members take the flu and Pneumovax vaccines in order to maintain the best possible pulmonary health. Of note, many pharmacies are offering drive-thru vaccine stations. To view locations where you can receive a flu shot in your area, use the Vaccine Finder at www.vaccinefinder.org.
  • Anxiety and/or depression have been a challenge for many individuals during the COVID-19 pandemic. The OI Foundation has held two community calls on this topic, focusing on resiliency and self-care (available at www.oif.org/podcast) as well as sharing numerous resources for addressing the pandemic, and will continue to offer similar events in the future.

To view the full COVID-19 Survey results, click here.


The impact of the pandemic is changing daily. We will be sending a second survey out in early 2021, so, if you missed the first survey, please be sure to enroll for the next one! To complete the survey, you must be a member of the OI Registry

CLICK HERE TO SIGN UP FOR THE OI REGISTRY