Category: OIF Events

OI Research Update: New Medical Treatments

Posted on by OI Foundation

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 Conference 2022

Posted on by OI Foundation

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

Posted on by OI Foundation

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

Posted on by OI Foundation

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

Posted on by OI Foundation

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

Posted on by OI Foundation

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.

OIF National Conference

Posted on by OI Foundation

 

Thank you for joining us at the 2021 Virtual OIF National Conference! 

The OIF Virtual Conference, held on July 10-11, 2021, provided live, online versions of some of the most popular informational and social sessions at the biennial OIF National Conference. It was so wonderful to see familiar and new faces of close to 600 registered attendees throughout the weekend!

We heard you! Feedback from the 2020 OIF Virtual Conference revealed that many attendees wanted more time for questions from the audience, new topics covered, more social events, and language translation. At the 2021 Virtual OIF Conference, we added extra time for Q&A to our most popular information sessions. This allowed OI expert speakers to answer almost every question asked by participants! The schedule featured several new sessions (Navigating a New Diagnosis, Ask the Expert, Fitness and OI), and plenty of social sessions (Unbreakable Spirit® Trivia Fundraiser, Virtual Lobby, Parents Meet & Greet, Kids Room, Youth Forum, and the Adults Social Hour)! For the first time ever, our most popular information sessions featured live Spanish and French interpretation. Recorded sessions will be available online in English, Spanish, and French.

Thank you so much to all of the incredible OI community members, OI experts, and sponsors who made this event possible.

Virtual OIF Conference Session Recordings are Now Available!

To watch recordings, click the session titles below, or visit the OI Foundation’s YouTube Channel!

 

Meet McKenzie Coan!

Posted on by OI Foundation

Meet McKenzie Coan!

What an incredible event! Last night, McKenzie Coan joined Dr. Kara Ayers (former OIF Board of Directors member and US Paralympian) and OI community members to discuss her experiences as a US Paralympic Gold Medalist and OI community member preparing to travel to Tokyo for the 2020 Summer Paralympics! Watch the recording of this event below!

McKenzie also shared that her new memoir, Breaking Free, is now available for pre-order!  McKenzie will be donating a portion of her presale profits to the OI Foundation, so be sure to order your copy TODAY! Click here to order.

In Breaking Free, McKenzie tells how she finds strength through swimming, despite the limited expectations placed on her by having osteogenesis imperfecta, or brittle bone disease. With her graceful freestyle stroke and never-quit attitude, McKenzie breaks through the barriers of disability and lives a full and spectacular life on the Paralympic stage and beyond.
Breaking Free shines light on the hottest topics in sport and life, from grit, determination, goal-setting, and sheer athleticism to mental health, self-care, body image, disability, discrimination, determination, family, humor, and hope.

 

OIF Conference Session Recordings are now Available!

Posted on by OI Foundation

Virtual OIF Conference Session Recordings are Now Available!

To watch recordings, click the session titles below, or visit the OI Foundation’s YouTube Channel!