Thank you for participating in the Impact Survey!

We are excited to share that the Impact Survey was completed by more than 2,000 OI community members from 66 countries! 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. 

We are thrilled to have collected the largest global gathering of data about the impact that osteogenesis imperfecta has on people with OI, families, and caregivers. This is a remarkable number of responses, and we eagerly await the first data publications,” added Tracy Hart, CEO of OIF.

The IMPACT Survey was made possible through a close collaboration and partnership between Mereo, Ultragenyx, and the OI community, led by the Osteogenesis Imperfecta Federation Europe (OIFE) and the OI Foundation (OIF). Click here to read the full press release.

OIF Unbreakable Spirit® T-Shirt Contest – VOTE Now!

Vote for your Favorite OIF T-Shirt Design!

Congratulations to OIF T-Shirt Contest finalists: Sue Krug, Darla Vogt, and Dottie Ruhlig!
Thank you to all artists and designers for creating wonderful graphics for the next official OIF t-shirt! While we wish we could use them all, the top 3 designs have been selected and were judged based on their originality, capturing the spirit of the OI community, and adherence to design and submission rules and guidelines.

*VOTE FOR THE WINNER!*
There are two ways to vote for your favorite t-shirt design:

  1. Visit the OIF’s Facebook page and LIKE the photo of your favorite design!

  2. Click here to vote by completing a survey.

Voting will end on October 31, 2021. The winning design will be featured on the OIF’s online t-shirt store starting on November 1st. The winner will receive acknowledgment in the OIF’s print newsletter, Breakthrough, as well as a FREE t-shirt with their design.

 

 

National Disability Employment Awareness Month

October is National Disability Employment Awareness Month (NDEAM)! The purpose of NDEAM is to educate about disability employment issues and celebrate the many and varied contributions of America’s workers with disabilities. Learn more at www.dol.gov/NDEAM.

Last year, Gary Phelan and Michelle Duprey joined the OIF to discuss Employment Accommodations during COVID-19. Both of the speakers have extensive experience practicing law focusing on employment and disability discrimination. In this session, they discussed the ADA and shared best practices for getting accommodations at work related to COVID-19. Watch the recording of this session at https://youtu.be/w-whtdK3NKc

Happy Birthday, Jo Ann!

Jo Ann Berkenbush, a long-time volunteer of the OI Foundation is celebrating her 70th birthday with the OI Foundation!

For her birthday, Jo Ann has invited friends and family to make a gift to the OIF’s Kasper Kendall Scholarship program, which was created in memory of Rosemarie Kasper and Jamie Kendall. Rosemarie, a dear friend of Jo Ann and the OI Foundation, attended nearly every OIF National Conference. Today, Kasper Kendall Scholarships provide financial assistance for OI community members to attend the OIF National Conference. To make a gift in honor of Jo Ann’s birthday to the Kasper Kendall Scholarship program, please visit www.oif.org/give/joannsbirthdayfundraiser.

Happy Birthday, Jo Ann, and thank you for your support!

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.

Update from the Centers for Disease Control and Prevention on COVID-19 Booster Shots

Update from the Centers for Disease Control and Prevention on COVID-19 Booster Shots

The OIF’s Medical Advisory Council recommends following the Centers for Disease Control and Prevention (CDC) COVID-19 guidelines. The COVID-19 Toolkit is an ever-evolving resource, it is our goal to provide community members with the most up to date medically verified information. The Centers for Disease Control and Prevention released the CDC Statement on ACIP Booster Recommendations regarding the Pfizer-BioNTech COVID-19 booster shot recommendations on Friday, September 24th, 2021.

CDC recommends:

  • people 65 years and older and residents in long-term care settings should receive a booster shot of Pfizer-BioNTech’s COVID-19 vaccine at least 6 months after their Pfizer-BioNTech primary series,
  • people aged 50–64 years with underlying medical conditions should receive a booster shot of Pfizer-BioNTech’s COVID-19 vaccine at least 6 months after their Pfizer-BioNTech primary series,
  • people aged 18–49 years with underlying medical conditions may receive a booster shot of Pfizer-BioNTech’s COVID-19 vaccine at least 6 months after their Pfizer-BioNTech primary series, based on their individual benefits and risks, and
  • people aged 18-64 years who are at increased risk for COVID-19 exposure and transmission because of occupational or institutional setting may receive a booster shot of Pfizer-BioNTech’s COVID-19 vaccine at least 6 months after their Pfizer-BioNTech primary series, based on their individual benefits and risks.

(Source: https://www.cdc.gov/media/releases/2021/p0924-booster-recommendations-.html )

We would like to encourage you to read the press release in its entirety at:  CDC Statement on ACIP Booster Recommendations .

OI and Covid-19

Osteogenesis Imperfecta (OI), while primarily known as a bone disease leading to frequent fractures, is at its core a genetic defect in collagen manufacture, assembly, and/or quantity.  While collagen is important in the normal growth and mineralization of bone, collagen also makes up a large portion of the connective tissue of the lungs.  Individuals with OI have underlying lung disease due to these collagen defects and, in fact, respiratory failure is the major cause of death in individuals with OI.  Therefore, it is highly likely that individuals with OI who develop COVID-19 will get more severe disease than the general population and should therefore be included in the vaccine prioritization group that includes those with chronic lung disease such as COPD. (Source Resource: Sample Vaccine Letter)

Resource: Research on Pulmonary Health and OI
The connection between chronic lung disease and osteogenesis imperfecta has been shown in multiple studies. You can share the following articles with your doctor and relevant parties.

If you have questions about COVID-19 and OI, please contact the OIF at bonelink@oif.org.

LAST CALL – The Impact Survey will close Sept 30!

Don’t miss your chance to make an IMPACT on the future of OI research! Complete the Impact Survey TODAY! 

Participate in the first-ever global OI survey to help us reach 2,000 participants and move OI research forward!
NOW is the time to complete the Impact Survey at www.impactsurveyoi.com. The survey will close on September 30th.

If you are an adult with OI, or a parent/caregiver of a child with OI, WE NEED TO HEAR FROM YOU! Complete the survey today at www.impactsurveyoi.com

Kids Social Zoom: OIF Virtual Costume Party

Kids Social Zoom:

OIF Virtual Costume Party

October 29th | 6pm EST

We had so much fun this summer during the kids zoom social at this year’s virtual conference! What better way to bring in the fall season than with a virtual costume party?

Join us Friday October 29th at 6pm EST for the Kids Social Zoom: Virtual Costume Party. Your child will have the opportunity to socialize with old friends and make new ones, play Halloween-themed ice breaker games, and so much more!