Category: Updates from the OIF

Research Announcement: ORBIT Study

Posted on by OI Foundation

The OI Foundation would like to bring your attention to a research study being conducted by Ultragenyx Pharmaceutical Inc:

The Ultragenyx Orbit clinical study is for individuals living with osteogenesis imperfecta (OI). The purpose of this study is to investigate the efficacy and safety of setrusumab in pediatric and young adult patients with OI Types I, III, or IV.  Setrusumab is a monoclonal antibody being developed for the treatment of osteogenesis imperfecta (OI). Study participants are at least 5 but not yet 26 years of age, have a confirmed diagnosis of OI Types I, III, or IV, had at least one fracture in the past year or at least two fractures in the past 2 years, and are willing to not receive bisphosphonate therapy during the study. For more information, please click here, or reach out to trialrecruitment@ultragenyx.com.

 

If you are interested in learning more about this trial and to see if you can participate you can reach out to trialrecruitment@ultragenyx.org.

 

OIF Conference 2022

Posted on by OI Foundation

The 2022 OIF National Conference will be held virtually during the weekend of July 9, 2022.

The 2022 Unbreakable Spirit® Walk-n-Wheel will be held on Friday, July 8, 2022.

The OI Foundation will host a full day of information sessions on Saturday, July 9, 2022.

This year’s virtual conference program will include a full day of information sessions led by experts in their respective fields in a question-and-answer styled format, similar to the Ask the Expert sessions from last year. The OI Foundation’s 2022 Virtual Conference agenda will feature information sessions including Navigating a New Diagnosis, OI Research Update, Mental Health, Cardiopulmonary and OI, Women’s Health, Dental Health, and (NEW!) Transition to Adult Care. Several information sessions will feature live translation to French and Spanish. Attendees will also have the opportunity to socialize with fellow participants at social sessions created for both adults and children.

The full conference agenda and registration will be available on the OIF website in May. This online program will be free of charge for all OI community members.

 

The 2022 Unbreakable Spirit® Walk-n-Wheel will be held on Friday, July 8, 2022. Grab your friends and family and create a walk-n-wheel team to  raise awareness of OI and funds for the OI Foundation. For more information, visit www.oif.org/walknwheel2022.

 

OIF Regional Conferences
The OI Foundation will host several smaller, in-person Regional Conferences around the country throughout this year. By hosting smaller regional conferences, we can deliver educational resources to our community and still provide a safe environment for gathering. The first Regional Conference will be held on July 30th in Tampa, Florida. Stay tuned for more information!

 

To view session recordings from the 2021 OIF Virtual Conference, please click here.

Impact Grant Applications – Deadline Extended!

Posted on by OI Foundation


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

CLICK HERE TO APPLY FOR AN IMPACT GRANT

The Fine Wines Strong Bones Online Auction is OPEN!

Posted on by OI Foundation

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.

Move OI Research Forward – Participate in OI Studies

Posted on by OI Foundation

Move OI Research Forward – Participate in OI Studies

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:

ORBIT Study

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 Wellbeing Study

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.

Use of clear aligners for the treatment of dental malocclusion in individuals with Osteogenesis Imperfecta Types III and IV

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

Longitudinal Study of Osteogenesis Imperfecta

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.

 

Special Virtual Office Hours Event: Impact Grants: 101

Posted on by Delores Selivon

Special OIF Virtual Office Hours Event: Impact Grants: 101

                                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.

To register for the session, please CLICK HERE

To register for the session, please CLICK HERE

For more information please contact Jessica Ransome at Jransome@oif.org or 301-947-0083.

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

 

COVID-19 Survey

Posted on by OI Foundation
The OI Foundation has created a third COVID-19 Survey focused on how the Omicron variant and the pandemic are impacting the OI community. All individuals with OI are encouraged to complete the survey. Responses are anonymous and will help guide future OIF programs.

Please take a few minutes to complete the survey at https://www.surveymonkey.com/r/DXZDHMJ

The survey will be open until March 1, 2022.