OI Canada
Special OIF Office Hours Event: Impact Grants 101
Thursday, March 3 | 7:00pm ET
Join us for a special office hours event this Thursday to learn more about the Jeanie Coleman Impact Grant program and how you can apply!
Click here to register to attend.
Click here to register to attend.
The Jeanie Coleman Impact Grant program provides OI community members with equipment or services that will improve quality of life. Items that have been awarded in the past include (but are not limited to) wheelchairs, technological devices (laptops, tablets), hearing aids, home adaptation, and accessible vans. The deadline to apply is March 4, 2022. If you have any questions, please contact Jessica Ransome at jransome@oif.org
The February edition of the OIF’s E-Newsletter is here! CLICK HERE to read about Impact Grants, Upcoming Events, COVID-19 survey, the OIF Information Center, and more!
This year’s Fine Wines Strong Bones DC and Fine Wines Naples auction have teamed up to offer incredible auction items! Now completely online, you can participate wherever you live to support the work of the OI Foundation. This year’s auction items include autographed sports memorabilia, gift certificates to your favorite chain restaurants, private wine tastings for 20, and so much more! To start bidding in this year’s online auction click the button below.
A clinical study is research that involves human volunteers and seeks to answer questions that will add to our knowledge about a medical condition or how to treat it. Learn more about types of studies, how they are organized, and what to consider before participating by reviewing the OIF’s What You Need To Know About Clinical Trials factsheet.
All current OI Studies are listed on the OIF’s Current Studies webpage at www.oif.org/currentstudies.
The OI Foundation would like to bring your attention to current OI research studies:
The Ultragenyx ORBIT study is investigating a new treatment in pediatric and young adults with OI Types I, III, or IV. You can find more information on the study flyer here.
If you are interested in learning more about this trial or would like to see if you are able to participate, please reach out to Erin at trialrecruitment@ultragenyx.com
OI Community Members Ages 13-17: Participate in the OI Wellbeing Study!
In partnership with the OIF, researchers at Baylor College of Medicine are conducting a study to better understand the mental health and pain experiences of the OI community. You will have the opportunity to share your individual experiences and discuss what you think could be improved for people living with OI. Your feedback will inform future research in this area.
Taking part in the study includes participating in an approximately one-hour online interview and the completion of a questionnaire, for which you will be compensated $50. This study is for US residents only. If you or your child are interested in participating in the study, please contact the study team at OIWellbeing@bcm.edu for more information.
The purpose of this study is to determine if it is safe to use Invisalign clear aligners in correcting the misalignment of teeth in people with OI. Clear aligners are transparent plastic trays that are designed to fit over your teeth. With each new tray, teeth are moved a little at a time until they reach the desired position.
For more information, or to see if you are eligible to participate, please contact: Dianne Nguyen, BBDC Project Manager at (713)798-6694 or diannen@bcm.edu
The Brittle Bone Disorders Consortium is currently recruiting for a Longitudinal Study of Osteogenesis Imperfecta. The purpose of this natural history study is to perform a long-term follow-up of a large group of people with osteogenesis imperfecta (OI). We will collect information including medical history, number of broken bones, surgeries done, medications taken, ability to walk, pain, lung function and breathing, hearing, and bone mineral density.
The overall goal is to improve the health and quality of life of people with OI. Click here to learn more about this study.
Join the OI Registry! The easiest way to learn more about current and upcoming clinical studies is to enroll in the OI Registry. Once you enter your information into this registry, the OIF or researchers will have access to your deidentified information and may ask you to participate in OI surveys or studies. Click here to join now.
The January issue of the OIF E-Newsletter is here! The January issue of the OIF E-Newsletter is here! Read about OIF National Conference 2022, Bone China Tea, Impact Grants, upcoming events, and more!
Although we are disappointed not to be able to meet in person again this year, the safety of the OI community is our top priority. This decision was made in consideration of the feedback we received from the OI Foundation Board of Directors, Medical Advisory Council, and OI community members.
The OI Foundation hopes to host several smaller, in-person Regional Conferences around the country throughout this year. By hosting smaller, more targeted regional conferences, we can deliver educational resources to our community and still provide a safe environment for gathering. The regional conferences will begin this summer and the full schedule will be posted as details become available.
We thank you for your understanding and patience as we navigate 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.
In honor of National Hot Tea Month and the 30th anniversary of the OIF’s Bone China Tea fundraising campaign, the OI Foundation has partnered with Driven Coffee Roasters to offer the OI Community delicious loose-leaf tea, coffee blends, honey sticks, and snacks. Be sure to check out the online shop today!
From January 9-23, 30% of sales from the OIF’s Bone China Tea shop will go towards supporting the work of the OI Foundation. Whether you are looking to stock up before National Bone China Tea Day (May 1, 2022) or need to restock your tea and coffee supply, there is something for everyone!
What goes best with your new tea purchased from Driven Coffee Roasters? A new OIF mug, of course! Shop the limited-edition Bone China Tea mug on the OIF’s bonfire store today to show your support and enjoy your tea in style. Click here to order your mug!
