OI Canada
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.
Join OIF Health Educator Jessica Ransome to learn more about the Jeanie Coleman Impact Grant Program during a special office hours event, Impact Grants: 101 on Tuesday, February 15 at 7PM ET. Log on to learn more about the Impact Grant program, walk through the application process, and ask questions.
WHAT IS AN IMPACT GRANT? The Children’s Brittle Bone Foundation (CBBF) / OI Foundation Jeanie Coleman Impact Grant program provides direct support to individuals and families living with OI in need of equipment or services that will improve their quality of life. Items that have been awarded in the past include wheelchairs, orthotics, hearing aids, and modified vans. The application deadline is February 25, 2022
CLICK HERE TO APPLY FOR AN IMPACT GRANT
