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!

Don’t Miss Your Chance to Make an IMPACT on the Future of OI Research!

Don’t Miss Your Chance to Make an IMPACT on the Future of OI Research!

The IMPACT Survey is the first-ever international survey aimed at capturing and quantifying the real impact OI has on people’s lives. 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. The Impact Survey will close at the end of this month.

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 Impact Survey TODAY at: www.impactsurveyoi.com

 

If you have any questions, please contact the OI Foundation at bonelink@oif.org.

Our Commitment to the OI Community

The OI Foundation has completed the initial phase of the OIF’s diversity, equity, and inclusion project. This first phase was designed to assess the OIF’s programs, activities, and business structures. With the help of diversity, equity and inclusion professional, Chaz Kellem, we conducted an  internal review of our programs and services to determine how we can be more inclusive as a Foundation in order to support the entire OI community.

Some of the goals of the OIF’s diversity, equity, and inclusion project are:
■ To evolve our OI community to reflect the demographics of the locations in which we serve
■ To make sure all members of the OI community are fully aware of and can access the full scope of OIF resources and services
■ To ensure every OI community member, staff member, and board member feels included and fully engaged

The next phase of this project will consist of incorporating OI Foundation staff training and development, business recommendations, board development, community engagement practices, and more. Please stay tuned for updates on this important project!

 

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.

 

OIF Breakthrough Newsletter: Summer 2021

OIF Breakthrough Newsletter: Summer 2021

Have you had a chance to read the latest issue of Breakthrough? The most recent newsletter features important updates from the OI Foundation including:

  • OIF Virtual Conference 2021
  • COVID-19 Resources
  • OIF Events
  • Programs for Medical Professionals
  • OIF Information Center Updates

Click here to read this issue of Breakthrough!

OIF National Conference

 

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!