Category: Updates from the OIF
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!
- Navigating a New Diagnosis
- Welcome & Research Update
- Dental Care Panel
- Pediatric Health Panel
- Adult Health Panel
- Fitness and OI
- Mild Forum
- Sunday Morning Update
- Closing Session
- Bienvenida y Actualización de la Investigación
- Panel de Salud para Adultos
- Panel de Salud Pediatrica
- Sesión Dental
- Navegando por un Nuevo Diagnóstico
- Actualización de la OIF
- Sesion de Cierre
- Naviguer à Travers un Nouveau Diagnostique
- Mot de Bienvenue et Mise à Jour Sur l’état de la Recherche
- Table Ronde sur la Santé Pédiatrique
- Conférence Dentaire
- Mise à jour du Dimanche Matin
- Discours de Clôture
Weekend Camp for Families with OI – Winder, GA
Camp Avengers – Winder, GA
September 24-26
Camp Avengers, a weekend family camp for families of children with OI, was started by Dr. Jill Flanagan (orthopedic surgeon at Children’s Healthcare of Atlanta) and will take place at Camp Twin Lakes- Will-A-Way in Winder, GA. The camp will be full of fun, family-centered activities to participate in throughout the weekend. For more information about Camp Avengers and to register, please contact the camp director, Brian Pritchard, at brian.pritchard@choa.org.
COVID-19 Vaccine Booster Shots
Update from the Centers for Disease Control and Prevention:
Federal health officials have developed a plan to begin offering COVID-19 vaccine booster shots this fall, pending final FDA evaluation of third doses of the Pfizer and Moderna mRNA vaccines and formal recommendations from CDC’s Advisory Committee on Immunization Practices (ACIP).
Read the full joint statement at https://bit.ly/3sA6rg7.
New CDC Guidelines for People who are Immunocompromised
New CDC Guidelines for People who are Immunocompromised
The OIF’s Medical Advisory Council recommends following the Centers for Disease Control and Prevention (CDC) COVID-19 guidelines. The CDC now recommends that people whose immune systems are moderately to severely compromised receive an additional dose of mRNA COVID-19 vaccine after the initial 2 doses. Having OI alone does not make a person immunocompromised. It is important to check with your doctor about receiving a third dose of the mRNA COVID-19 vaccine. Widespread vaccination is a critical tool to help stop the pandemic. Read CDC’s statement.
COVID-19: Delta Variant
The Centers for Disease Control and Prevention states the following in regards to COVID-19 Delta variant transmission rate and severity:
The Delta variant causes more infections and spreads faster than earlier forms of the virus that causes COVID-19. It might cause more severe illness than previous strains in unvaccinated people.
- Vaccines continue to be highly effective at preventing hospitalization and death, including against this variant.
- Fully vaccinated people with breakthrough infections from this variant appear to be infectious for a shorter period.
- Get vaccinated and wear masks indoors in public spaces to reduce the spread of this variant.
(Source: https://www.cdc.gov/coronavirus/2019-ncov/variants/delta-variant.html)
COVID -19: Delta Variant and Mask Recommendation
The Centers for Disease Control and Prevention states “To maximize protection from the Delta variant and prevent possibly spreading it to others, wear a mask indoors in public if you are in an area of substantial or high transmission.” (Information from the Centers for Disease Control and Prevention website)
Here at the OIF we are pleased that our second COVID-19 survey results showed that 82% of respondents wear a mask or facial covering all the time when they are in public or indoors and unable to socially distance.
For more information about COVID-19, including the Delta variant, COVID-19 Vaccination Updates and Vaccine Finder resource, please visit the OIF’s COVID-19 toolkit at www.oif.org/category/covid19
Help create programs that benefit all OI community members
For 40 years, the OI Foundation has held a biennial National Conference that brings together people with OI, their families, medical professionals, and others in the OI community. In the past, attendees would spend three days meeting with OI experts, asking questions and connecting with friends (both old and new) from all over the world. Sadly, in 2020, the planned OIF National Conference in Omaha, Nebraska had to be postponed and, in its place, the OIF held the first-ever Virtual National Conference.
We saw huge increases in attendance numbers from individuals who have not been able attend past OIF National Conferences due to travel as well as international attendees. We were very proud of the programming for the 2020 Virtual Conference but still looked forward to hosting an in-person National Conference in 2021. Unfortunately, due to continued high rates of infection for COVID-19, the OI Foundation Board of Directors and Staff made the difficult decision to postpone the in-person National Conference once again. In its place, we decided to host another Virtual National Conference. Thanks to the support of our dedicated OI community members, we were able to build on the success of the 2020 Virtual Conference by incorporating new social and informational sessions and special features to the 2021 Virtual OIF Conference.
For the first time ever, we were able to offer live translations for several of the most popular sessions. This allowed participants to listen to vital information sessions in English, Spanish, or French during the conference. In addition, we are now able to offer translated session recordings as a resource in the future.
Feedback from the 2020 OIF Virtual Conference revealed that many attendees would like more time for questions. This year, we reformatted our information sessions to feature less formal presentations and more time for questions. In addition, we hosted our first-ever Ask the Experts session. During this session, attendees had the opportunity to join breakout rooms with OI experts for a conversation with fellow community members to answer questions and offer advice.
We are hopeful to be able to gather in person in 2022 in Orlando, Florida for the next OIF National Conference but we know we can’t go back to the way conferences have been held in the past. Our hope is to continue building on what we’ve learned over the past two years in our effort to reach all members of the OI community. Our hope is to host a hybrid National Conference with both in-person sessions as well as a virtual component for those who are not able to attend in person. As we continue to expand our outreach and resources to ensure all members of the OI community have access to top medical information and current updates, we need your help now more than ever!
Please consider making a gift to the OI Foundation to help us navigate the ever-changing future and create programs that benefit all OI community members. Whether it’s the OIF National Conference or the various virtual meetings, your support will help us reach every person who needs the support, information, and services offered by the OI Foundation.
Thank you for your continued support of our activities and our mission of improving the quality of life for every person living with OI.
Wishing you all a happy and healthy summer,
Tracy Hart
