Thank you for joining us this weekend for the Virtual OIF Conference! We can’t wait to see you in-person in Orlando, FL at OIF National Conference 2022!
Author: OI Foundation
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:
- Gain a better understanding of all genetic forms of OI
- Expand treatment options for those with OI
- 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.
Adults Social Hour
Adults Social Hour
Join us on Saturday, July 10th at 7:30pm ET for your favorite conference social session, the Adults Social Hour! Whether you are new to an OIF conference or a longtime veteran, everyone is welcome to attend.
During the social hour, you will have the opportunity to sip and swirl your way through a Virtual Wine Tasting (shopping list below), solve your way out of a Virtual Escape Room, or prove one’s innocence in the Murder Mystery Room led by OI community member, Susie Richard. There will also be additional breakout rooms for you to mingle with fellow conference attendees and catch up with old friends.
To register to attend the Adults Social Hour, click here.
For more information or questions, please contact Christina Teufert at cteufert@oif.org.
Virtual Wine Tasting
During the Adults Social Hour, you will have the opportunity to participate in a Virtual Wine Tasting from Total Wines & More! In this breakout room, attendees will enjoy a 15-minute presentation from a Total Wines & More wine extraordinaire while enjoying three perfect wines for summer. If you wish to participate, please order your wines ahead of time and download the tasting sheets below. Following the presentation, attendees are welcome to stay in the room and chat with fellow conference attendees.
Shopping List:
Armani Prosecco DOCG, Dom Loubejac Pinot Noir Willamette 2019, Olema Rose Cotes De Provence 2020
Click the links below to download your individual tasting notes:
Armani Prosecco DOCG, Dom Loubejac Pinot Noir Willamette 2019, Olema Rose Cotes De Provence 2020
Murder Mystery Room
During the Adults Social Hour you will have the opportunity to witness a murder… just kidding! Please Join the Balderdashes on Saturday night for an hour and a half of sleuthing and accusations as our Detective Inspector Napp, assisted by Suzanne Richard and her fellow sleuths Ann Marie Geiger, J.P. Richard, and Shashi Bangera get to the bottom of poor Lersham’s murder. At the moment, three of the suspects are still at large and we are looking for assistance from three intrepid conference attendees to help flesh them out. Please contact Suzanne Richard at open.circle.dc@gmail.com if you are interested in playing a role.
Virtual Escape Room
Game night aficionados & puzzle solvers unite! In this breakout room, you will have to work together with other members of the OI community and test your “break out” skills by attempting to escape a secure zoom room. We doubt you would ever want to escape the Adults Social Hour, but in this room we highly recommend it!
Conference Translation
New this year, we are excited to feature captioning as well as live Spanish and French translation during the most popular informational sessions!
URGENT RECALL INFORMATION
URGENT RECALL INFORMATION: Supplemental oxygen or a positive pressure breathing device such as CPAP or BiPAP may be prescribed to help manage breathing problems in individuals with osteogenesis imperfecta. On June 14, 2021, the company Philips released a recall notification update. The recall notification update is related to some of their mechanical ventilator devices, Philips Bi-Level Positive Airway Pressure (Bi-Level PAP) and Continuous Positive Airway Pressure (CPAP).
We strongly encourage you to visit the following link to learn more about possible health risk, replacement and repair, recall notification advice and additional pertinent information related to this recall: June 14th, 2021 Recall Notification Update . The OI Foundation is committed to keeping OI community members informed and as any further notifications become available, we will provide updates.
For questions regarding the recall, please visit the Additional Information section at the following link: June 14th, 2021 Recall Notification Update. While the OI Foundation is NOT affiliated with the Philips Company, we are committed to providing up-to date information for our OI-Community members.
OIF E-News: June 2021
The June issue of the OIF E-Newsletter is here! Learn more about Virtual Conference, OI research, and updates from the OIF!
Click here to read this issue.
Happy #pridemonth!
This #pridemonth and all others, the OIF supports all members of the OI and LGBTQ+ community. The OIF strives to be an inclusive organization for all. To learn more about these long-term efforts, please join us for a special session at the OIF National Conference with diversity, equity, and inclusion consultant Chaz Kellem. To register to attend this session, please visit https://us02web.zoom.us/meeting/register/tZMsduGhqD4tEt0E5OwWJb6gclyk4rJXlnbN
OIF Virtual Conference Schedule
Check out the Virtual Conference program below and click the registration links for each session you would like to attend!
FRIDAY, JULY 9
7:00pm
Unbreakable Spirit® Trivia
SATURDAY, JULY 10
10:30-11:45am ET
Navigating a New Diagnosis
Sponsored by Ultragenyx Pharmaceutical
12:15-1:45pm ET
Welcome/ Research Update
2:00-4:00pm ET
Pediatric Health Panel
Sponsored by Shriner’s Canada
2:00-4:00pm ET
Kids Room
2:00-4:00pm ET
Adult Health Panel
sponsored by Kennedy Krieger Institute
4:30-5:30pm ET
Parents Meet and Greet
7:30-9:30pm ET
Adults Social Hour
SUNDAY, JULY 11
10:30-12:30pm ET
Ask the Expert
12:00-1:00pm
Fitness and OI
1:00-2:00pm ET
Mild OI Forum
Sponsored by Ultragenyx Pharmaceutical
2:15-3:15pm ET
Dental Session
3:30-5:30pm ET
Youth Forum Focus Group
3:30-5:30pm ET
Women’s Health Session
5:45-6:30pm ET
Closing Session
Introduction to Meditation
Join the OI Foundation on June 3 at 7pm ET for a guided introduction to meditation for the OI community with Sharon Trahan, former President of the OIF Board of Directors. For this virtual session, you will not need any special equipment or familiarity with meditation. Sharon does suggest you find a quiet space, free of distractions.
CLICK HERE to register!
