Author: OI Foundation

Support the OIF While Shopping Walmart.com

Posted on by OI Foundation

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

Posted on by OI Foundation

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.

OI Study: Evidera

Posted on by OI Foundation

Evidera, a company specialized in patient-centered outcomes research, are currently looking for individuals living with osteogenesis imperfecta (OI).

Please take a moment to read a message from Evidera below:

We are conducting a study to understand patients’ experiences of living with osteogenesis imperfecta (OI) and how symptoms, such as pain and fatigue, affect their everyday lives. This information will inform future clinical trials to ensure relevant patient experiences are captured.  The study does not involve treatments; we are only interested in opinions.

Those interested will be invited to take part in two 60 minute online or telephone qualitative interviews. We very much value and respect your time, so you will be compensated with a total amount of $250 ($125 per interview). Compensation will be placed onto an e-gift card.

If you have been diagnosed with OI or are the parent/caregiver of a child (8-17 years old) with OI and would like more information about the study, please contact Katherine Kirk via Katherine.kirk@evidera.com or +1 301 312 5386.

Exciting new data update from Ultragenyx!

Posted on by OI Foundation
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.

What We’re Learning from a Natural History Study

Posted on by OI Foundation

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.

Click here to learn more!

Michael Geisman Fellowship Grant

Posted on by OI Foundation

The Michael Geisman Fellowship Grant program awards funding to post-doctoral trainees who are currently working on projects with clear relevance to osteogenesis imperfecta (OI), or who have projects that will enable them to develop expertise in OI research.

Applicant Requirements:

  • Applicant must hold an MD, DDS, DO, or PhD, and be appointed at the level of a post-doctoral trainee, or equivalent, within an academic institution.
  • Applicant should have completed their Ph.D. or clinical training within the past five (5) years.

Fellowship Guidelines:

  • Michael Geisman Fellowship awards provide up to $50,000 per year. It is the intention of the OI Foundation that grant monies be used to fund actual costs related to the research being performed including Fellow salary, fringe benefits, and supplies.
  • Fellowship awards are for one year; a second year of funding may be approved based upon satisfactory performance during the first year of funding.
  • Research must be done under the supervision of mentor with training and experience in osteogenesis imperfecta research or research in a related field.

How to Apply:

  1. Complete application
  2. Mentor of applicant must submit a copy of his/her biosketch and a letter of recommendation on behalf of the trainee, which also confirms that the mentor will supervise the trainee’s research.
  3. Applications require two additional letters of recommendation from scientists or clinicians who can comment upon the applicant’s training, ability, and potential to develop expertise in OI research.
  4. Submit application, reference letters, and mentor biosketch as PDF documents to sconnors@oif.org NO LATER THAN October 23, 2023.

If you have any questions, please contact Stacie Connors at sconnors@oif.org.