OIF National Conference

Thank you for joining us at the 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.

See you next year! We can’t wait to see you in-person for the OIF National Conference next year! Please mark your calendar to join us in Orlando, Florida on July 7-10, 2022!


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 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!

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

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.

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

Registration is now open for the OIF Virtual Conference!

On July 10-11, 2021, the OI Foundation will host the 2021 Virtual OIF National Conference. The conference will provide live online versions of some of the most popular informational and social sessions at the biennial OIF National Conference, including Navigating a New Diagnosis, OIF Research Update, Pediatric and Adult Health Panels, Women’s Health, Ask the Expert, and more! To view the full program and to register to attend, please visit www.oif.org/virtualconference!

National Osteogenesis Imperfecta (OI) Awareness Week begins Saturday, May 1!

How will YOU raise OI awareness this week?
National OI Awareness Week is scheduled around Wishbone Day (May 6), the international day of OI awareness. There are so many ways to raise OI awareness during OI Awareness Week and Wishbone Day – check out some ideas below!

Raise OI Awareness 

Raise OI Awareness on Social Media
Last year, we reached more than 200,000 people on social media during National OI Awareness Week! We need your help to reach even more this year! Be sure to like and share our #SHAREforAWARENESS posts on Facebook, Twitter, and Instagram pages throughout the week!


Update your Facebook Profile Picture! 

Use your Facebook page to raise OI awareness! Click here to add a National OI Awareness Week frame to your Facebook profile picture!


Share Your OI Story

One of the best ways to raise awareness of osteogenesis imperfecta is to share your OI story and experiences. Gemma’s Corner, created in memory of OIF Founder Gemma Geisman, is a place where OI community members can share their OI story, as well as listen to others. Click here to listen to OI community member stories in Gemma’s Corner. We want to hear from you! To share your story, please record a 3 to 5 minute video and send it to jransome@oif.org. For more information, or if you need assistance recording or sending in your video, please contact the OI Foundation.


Support the OI Foundation

Create a Facebook Fundraiser
Invite your family and friends to join you in raising OI awareness and supporting the OI Foundation during National OI Awareness Week by creating a fundraiser for the OI Foundation on Facebook! Click here to get started!

Double Good Popcorn Fundraiser
Whether you are into salty or sweet, this awareness week fundraiser has something for everyone! Double Good popcorn is not only delicious but 50% of the sales go towards supporting the mission of the OI Foundation when you purchase from the OIF’s virtual popcorn store or create a store of your own! Here’s how to get started:

  1. Download the Double Good app
  2. Create your own pop up store using the OIF’s code: TJHSBQ
  3. Invite your friends and family to purchase popcorn from your pop up store in support of the OI Foundation from Monday, May 3 – Friday, May 7!

Interested in ordering Double Good popcorn? The OIF Popcorn store will be open May 3-7!

 

Bone China Tea
Bone China Tea participants can contribute to the OIF’s awareness, support and research efforts by enjoying a cup of tea in the comfort of their own home. The best part is, there is no event to plan! Simply invite your guests to enjoy a relaxing cup of tea at home and then make a gift to the OI Foundation with the money they may have saved by not going out to a real event.

While planning your Bone China Tea, you have the option to mail physical invitations to your guests, or hold the event completely online. Start planning your Bone China Tea event at www.oif.org/campaign/bonechinatea/


 

Mark Your Calendar

May 1, 2021
Virtual Bone China Tea Party

Sip, Sip, Hooray! Please join the staff of the OIF and OI community member, Susie Wilson, for a virtual tea party on May 1st for Bone China Tea Day during National OI Awareness Week. Bring your finest china and freshest baked good for warm conversation and togetherness on May 1 at 3:30pm ET. Dress to impress… your mug that is! During the event, we will take a poll of best teacup and the winner will receive a prize. All ages are welcome to attend. To register for the event, please visit www.oif.org/event/virtualbonechinateaparty/

May 6, 2021
Wishbone Day (International OI Awareness Day)

Wear your yellow in celebration of Wishbone Day! Each year on Wishbone Day, the OI Foundation shares facts about OI on social media every hour. Make sure you are following the OI Foundation on Facebook, Twitter, and Instagram so you can help us raise OI awareness worldwide by liking and sharing every #SHAREforAWARENESS and #OIstrong post!

May 6, 2021
The Current State of OI Research: An Update for the OI Community

There is more OI research being done now than ever before, and the complex findings and breakthroughs can be hard to decipher. Join the OIF in the first of a new series as we demystify and contextualize medical research in The Current State of OI Research: An Update for the OI Community. This series kicks off on Wishbone Day, May 6 at 6pm ET with a conversation between Cameron Penn, President of the OIF Board of Directors, and Dr. Brendan Lee MD, PhD, Principal Investigator of the Brittle Bones Disorders Consortium and OIF Medical Advisory Council Member. Click here to register to attend.

 

We can’t wait to celebrate National OI Awareness Week with you!

Virtual Northeast Regional Conference

Virtual Northeast Regional Conference

The OI Foundation is hosting the first Virtual Northeast Regional Conference on Saturday, February 27 from 9:00am to 12:00pm Eastern Time.

This virtual meeting, chaired by OIF Medical Advisory Council Member Dr. Cathleen Raggio (Co-Director of the Kathryn O. and Alan C. Greenberg Center for Skeletal Dysplasias at Hospital for Special Surgery and Pediatric Orthopedic Surgeon at the Hospital for Special Surgery in New York City), will feature a series of presentations by experts from the Hospital for Special Surgery (HSS) and other clinics in the Northeast United States. Like past OIF Regional Conferences, this event will provide a brief overview of multiple topics and will feature speakers with extensive experience in treating OI.

Presentation topics will include orthopedic treatments, cardiopulmonary health, hearing, nutrition, physical therapy, and mental health.  After each presentation, the speaker and a panel of Northeast-based medical providers will answer audience questions. The full agenda can be found here.

 


Who should attend? 

The OIF Virtual Regional Conferences are for both OI community members and medical professionals who want to learn more about understanding OI from infancy through adulthood. The event will feature speakers and panelists from New York and New England.

OIF Regional Conferences are great opportunities for those who have never attended an OIF event to learn more about osteogenesis imperfecta and connect with local providers.