Category: Updates from the OIF

We Need to Hear from YOU!

Posted on by OI Foundation

Dear OI Community Member,

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 need 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

If you began taking the Impact Survey but did not complete it, please be sure to return to the website to fully complete and submit the survey.

Please take a look at the flyer below for more information. If you have any questions, please contact the OI Foundation at bonelink@oif.org.

Thank you so much for your participation!

 

COVID-19 Update: Delta Variant

Posted on by OI Foundation

The OIF’s Medical Advisory Council recommends following the Centers for Disease Control and Prevention (CDC) COVID-19 guidelines. The Centers for Disease Control and Prevention (CDC) notes the following: 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.

For more information about the Delta variant, visit the Centers for Disease Control and Prevention (CDC) resources below:

We are pleased that the OIF’s 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.

Vaccine Finder
We encourage you to check out the Vaccine Finder below to assist with locating COVID-19 vaccines in your area. The Vaccine Finder is a resource operated by Boston Children’s Hospital and supported by the Centers for Disease Control and Prevention and the United States Digital Service. Resources like the Vaccine Finder are one of many included in the OIF’s COVID-19 Toolkit.  If you have questions about COVID-19 and OI, please contact the OIF at bonelink@oif.org.

OIF’s COVID-19 Toolkit
The OIF’s COVID-19 toolkit provides information and resources related to the COVID-19 pandemic for all OI community members. The toolkit includes recordings of COVID-19 Q&A Community calls, the OIF’s COVID-19 surveys and survey results, and up-to-date information. Please visit the OIF’s COVID-19 toolkit at www.oif.org/category/covid19.

Meet McKenzie Coan!

Posted on by OI Foundation

Meet McKenzie Coan!

What an incredible event! Last night, McKenzie Coan joined Dr. Kara Ayers (former OIF Board of Directors member and US Paralympian) and OI community members to discuss her experiences as a US Paralympic Gold Medalist and OI community member preparing to travel to Tokyo for the 2020 Summer Paralympics! Watch the recording of this event below!

McKenzie also shared that her new memoir, Breaking Free, is now available for pre-order!  McKenzie will be donating a portion of her presale profits to the OI Foundation, so be sure to order your copy TODAY! Click here to order.

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.

 

OIF Conference Session Recordings are now Available!

Posted on by OI Foundation

Virtual OIF Conference Session Recordings are Now Available!

To watch recordings, click the session titles below, or visit the OI Foundation’s YouTube Channel!

 

Research Update Session: Women’s Health and Pregnancy

Posted on by OI Foundation

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

Posted on by OI Foundation

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

Posted on by OI Foundation

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!