OIF Conference Session Recordings are now Available!

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!

Meet (Virtually) McKenzie Coan!

Thursday, August 5, 2021
7:30pm ET

Before heading to Tokyo for the Paralympics, McKenzie Coan will join us to discuss her experiences as a US Paralympic Gold Medalist and OI community member.

Dr. Kara Ayers, former OIF Board of Directors member and US Paralympian, will interview McKenzie about her new memoir, Breaking Free, which will be available for presale on August 2, 2021.

McKenzie will be donating a portion of her presale profits to the OI Foundation. To learn more about her memoir and order a presale copy, visit her website at www.mckenziecoan.com/breaking-free.

All are welcome to attend! Please click the ‘Register Now‘ button to attend this virtual event


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.

 

NEW Virtual Office Hours Schedule!

A message from OIF Health Educator, Jessica Ransome:

Hello Everyone! It was so great seeing so many familiar faces and meeting new community members over the weekend during Virtual OIF Conference! I encourage you to join me for OIF Virtual Office Hours – now TWO DAYS a week!

TUESDAYS (12pm ET and 6pm ET)

THURSDAYS (12pm ET and 6pm ET)

Log on to learn more about OIF programs and resources, ask questions or just drop in to say hello! I hope to see you soon!

CLICK HERE TO JOIN THE OIF OFFICE HOURS ZOOM CALL

Meeting ID: 964 327 4462

Passcode: 9pCeh7

Questions? Please contact Jessica at jransome@oif.org.

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:

  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.

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!

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.