The new OIF Adult Health Toolkit is now available!
Category: Updates from the OIF
OIF E-Newsletter: November 2023
The OIF’s November E-Newsletter is here! Read about upcoming OIF Conferences, Current OI Research, and more at https://mailchi.mp/oif/nov2023
Celebrate #GivingTuesday with the OI Foundation!
How will YOU make an impact on #GivingTuesday?
MAKE A GIFT!
Make a donation to the OI Foundation in honor or memory of a loved one.
Click here to make a gift to the OIF.
CREATE A FACEBOOK FUNDRAISER!
Create a Facebook Fundraiser for the OI Foundation for #GivingTuesday! Invite your friends and family to celebrate this special day by supporting a cause that is close to your heart. Get started today at https://www.facebook.com/fund/OsteogenesisImperfectaFoundation/!
SHARE YOUR OI STORY!
One way to raise OI awareness in your community is to share your OI story.
You can share your story with friends and family on Facebook, or in Gemma’s Corner (created in memory of OIF Founder Gemma Geisman), a place for OI community members to share their stories. Click here to listen to the stories of OI community members in Gemma’s Corner.
SHOP THE OIF STORE!
Snag OIF apparel from the OIF’s online store! Items include Unbreakable Spirit® Hats, T-shirts, an OIF Water Bottle, Unbreakable Spirit® Tote Bag, and more! Click here to start shopping.
TELL EVERYONE!
Encourage others to support the OI community on #GivingTuesday!
Update from Dr. Alison Skrinar on the Ultragenyx trials, Orbit and Cosmic
The OI Foundation recently shared an announcement from Ultragenyx which shared Interim data from the Phase 2 portion of their Orbit study. This data showed that treatment with setrusumab reduced incidence of fractures in patients with OI by 67% following at least 6 months of treatment and demonstrated improvements in lumbar spine bone mineral density (BMD). CLICK HERE TO READ THE FULL PRESS RELEASE
Ultragenyx is now enrolling participants for the Phase III of this trial. The trials are open to children with Types I, III, and IV OI and have sites around the country.
Dr. Alison Skrinar (Ultragenyx) joined OIF Board Member Dr. Michelle Fynan to discuss setrusumab and the clinical trial process in a video for the OI community. Please take a minute to watch this video at https://www.youtube.com/watch?v=kUYp3REcO2g
Somewhere to Go
On October 19-20, the OI Foundation hosted a meeting titled “Somewhere to Go for Adults with Childhood-Onset Rare Diseases: A Conversation About How We Can Fill Gaps in Care.”
Attendees worked to address the issues adult patients with a rare disease face as they navigate the health care system. Topics covered during the meeting included examining current rare disease care infrastructure; the role of technology in providing quality care; payment model issues; patient engagement issues and current care models including centers of excellence and existing consortium and network models.
We are so grateful to all who attended and participated!
Support the OIF While Shopping Walmart.com
Support the OIF While Shopping Walmart.com on Black Friday and Cyber Monday!
Walmart recently launched Walmart Spark Good Round Up where customers can round up their purchases to the nearest dollar and donate the change to their favorite charity. We would love for you to choose us as your charity to receive these donations every time you shop on Walmart.com. Click here to set the OI Foundation as your favorite charity!
Participate in the OI Wellbeing Study
Participate in the OI Wellbeing Study
Baylor College of Medicine is conducting this OI Wellbeing Study as a part of the Brittle Bone Disorders Consortium which aims to improve the lives of people with Osteogenesis Imperfecta.
This study addresses an under-researched aspect of health critical to the wellbeing of the OI community, namely psychological health. Participants will meet with a researcher over a secure teleconference platform for about 1 hour and complete a series of questionnaires about mental health, physical health, quality of life, social wellbeing, and experience with health care professionals. Participants are compensated $50.
This information may help develop psychological interventions personalized for people with OI. Please share information about this study with any adult with OI that you believe may be interested in participating.
If you have any questions about the study or are considering participating, please email OIWellbeing@bcm.edu or call (713) 798-0117.
Exciting new data update from Ultragenyx!
Today, Ultragenyx announced Interim data from the Phase 2 portion of the Orbit study, which showed that treatment with setrusumab reduced incidence of fractures in patients with OI by 67% following at least 6 months of treatment and demonstrated improvements in lumbar spine bone mineral density (BMD).
To learn more about Ultragenyx research, visit https://www.ultraclinicaltrials.com/OI or reach out via email, OIStudyInfo@ultragenyx.com.
OIF E-Newsletter: October 2023
What We’re Learning from a Natural History Study
From the BBDC: Osteogenesis Imperfecta Over Time: What We’re Learning from a Natural History Study
To learn more about the natural history of individuals with osteogenesis imperfecta (OI), the Brittle Bone Disorders Consortium (BBDC) is conducting a “Longitudinal Study of Osteogenesis Imperfecta.” The team is performing a long-term follow-up of a large group of people with OI to investigate vertebral compression fractures of the spine, scoliosis (curvature of the spine), dental health, and more.
