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!
Category: OIF Events
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.
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!
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!
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.
COVID-19 Vaccine Update Session
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
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
Reflecting on 50 Years – A Letter from Gemma Geisman
To prepare for the OIF’s 50th anniversary, OIF Founder Gemma Geisman wrote a beautiful letter reflecting on the OI Foundation’s accomplishments and activities since 1970. Her daughter, Cathy, shared this letter with the OI community in Gemma’s Corner.
Gemma was creative, passionate, and a wonderful listener. She listened to learn about you, she listened to find out how to help you, and she listened because she cared about you.
Gemma’s Corner, created in memory of Gemma, encourages the OI community to keep sharing with each other, caring for each other, and providing support to one another.
For more information, or to share your story, please contact Jessica at jransome@oif.org.
What A Year!
Dear Friend,
As we near the end of 2020, we are taking a moment to reflect on what has certainly been a historic year. We are thankful for the generosity of individuals like you that allows the OI Foundation to continue providing programs and services that benefit all members of the OI community. We have worked hard to pivot and expand our programs to meet the needs of the OI community during this global crisis and want to share a few of our accomplishments this year. Please click here to view the OIF’s list of accomplishments.
If you have not had the chance to remember us with a gift this time of year, please take a moment to do so at www.oif.org/donate. Thank you again for your support!
