Category: OIF Events

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.

OIF Virtual Conference Schedule

Posted on by OI Foundation
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!

Posted on by Delores Selivon

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!

Virtual Northeast Regional Conference

Posted on by Delores Selivon

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.

COVID-19 Vaccine Update Session

Posted on by Delores Selivon

The OI Foundation hosted a second COVID-19 Vaccine Q&A on Thursday, February 11, 2021 at 6:00pm ET. Drs. Bottazzi, Lee, and Sandhaus shared updates on the COVID-19 vaccines and answered questions from OI community members. Discussion topics included anticipated new vaccines, social-distancing in 2021, and more.

Meet the Speakers

  • Maria Elena Bottazzi, PhD – Associate Dean of the National School of Tropical Medicine, Professor of Pediatrics, and Co-Director of Texas Children’s Center for Vaccine Development at Baylor College of Medicine. She is an internationally recognized vaccinologist, has published over 150 scientific papers, and co-chairs the New Vaccines and Therapeutics Taskforce of the Lancet Commission on COVID-19.
  • Brendan Lee, MD, PhD – Robert and Janice McNair Endowed Chair in Molecular and Human Genetics, Professor and Chairman, Department of Molecular and Human Genetics, Baylor College of Medicine
  • Robert A. Sandhaus, MD, PhD, FCCP – Pulmonologist, National Jewish Health

OIF National Conference Update

Posted on by Delores Selivon

After much consideration, we have decided to make the 2021 OIF National Conference a virtual affair.  The OIF Board of Directors, staff and medical professionals believe there’s still too much uncertainty surrounding travel and large gatherings, and letting this decision linger any longer could create unfair travel burdens or financial hurdles and those are the last things we want for our community.

The success we enjoyed in July with our first virtual National Conference made this decision even easier. Of the thousands who joined us from as far away as Australia, more than half of them were attending their very first conference. Now, we have a tremendous opportunity to build on that reach and amplify that success with expanded programming and even more community elements.

If all goes as planned, the 2022 National Conference at the JW Marriott Grande Lakes in Orlando will be in-person, but will also be available virtually, as will nearly all programming going forward.

We thank you for your understanding and patience as we navigate the Foundation through these unusual times. We’ll release more details in the coming months, but please don’t hesitate to reach out if you have any questions. The OI Foundation can be reached by phone at (844) 889-7579 or by email at bonelink@oif.org.

Warm Regards,
Cameron Penn
President, OIF Board of Directors
cameron@heyguymedia.com