Category: Updates from the OIF

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.

 

Apply to be an OI Support Group Leader!

Posted on by OI Foundation

Apply to be an OI Support Group Leader!

Applications are due by August 25, 2023

The OI Foundation recognizes the value of creating a space where members of the OI community can share their personal experiences, and both receive and provide support. For many years, OI Support Groups met in person, but with advancements in technology, some of the groups have chosen to meet virtually in recent years. The OIF is now expanding this important program to ensure that everyone in the US has the opportunity to connect either by geography or by interest. We need your help to make this program successful!

The goal of the OI Support Group Program is to provide space for sharing, educating, and socializing.

  • Sharing allows participants to talk about their experiences and feelings and offer each other mutual support and encouragement.
  • Education occurs when group members receive new information on topics of interest. OI Foundation videos or local speakers can be sources of information. Topics can be related to OI itself or any areas involved in living with OI (e.g., school, recreation, employment, insurance, driving, etc.).
  • Social time provides an unstructured opportunity for members to enjoy each other’s company. Many support groups schedule a special annual event, such as a picnic or holiday party, in addition to the regular meetings.

The OI Support Group Program is divided into five Regional Groups (Northeast, Southeast, Southwest, Midwest, and West) and OI Affinity Groups. With support from OIF staff, each Support Group is led by an OI community member.

Regional Support Group Leaders will receive an annual stipend plus travel to the OIF’s biennial National Conference. Regional Support Group Leaders must live in the geographic area they are looking to support and have experience with OIF programs and services.

Affinity Group Leaders can live anywhere in the world but the OIF can only cover domestic airfare for the National Conference. Hotel and registration fees for internationally based Affinity Group Leaders will be covered. OI Affinity Groups are nationally-based groups of individuals with a shared interest or common identity characteristic. Examples of Affinity Groups include LGBTQIA+, Young Adults, Parents of Children with OI, Accessible Travel, Health and Wellness.

APPLY TODAY

If you have any questions, please email Kenna Coleman at kcoleman@oif.org

RAREis Global Advocate Grant

Posted on by OI Foundation
We are so proud to have been awarded a 2023 #RAREisGlobalAdvocateGrant by Horizon Therapeutics RAREis Program which recognizes our contributions to advancing, educating and addressing the needs of the rare disease community. We look forward to continuing to make a meaningful difference for those living with osteogenesis imperfecta (OI).
Click here to learn more about the #RAREis Global Advocate Grant and the other incredible organizations honored.

Welcome to the OIF Board of Directors, Billy!

Posted on by OI Foundation

Billy Huang is a biologist-turned-entrepreneur originally from New York City and a current fellow with the Office of Workforce Strategy. Growing up in a low-income and first-generation household and as a person with a disability, he is passionate about addressing intersectional issues related to poverty, health, and access to economic opportunity. Through his startup, Source Development Hub, Billy has had the opportunity to work with multiple regional and national non-profit organizations, including the Urban Institute and Corporation for Supportive Housing, on projects mapping affordable housing throughout Connecticut.

Most recently, Billy served as the Director of Data Analytics and Impact at the Housing Collective, a regional nonprofit focused on collective impact work spanning the homelessness services and affordable housing sectors. His work there included the development of a Housing Innovation Lab to foster tech-focused interventions aimed at understanding and addressing homelessness and affordable housing. Complementing his professional work, Billy advocates for disability rights at the municipal level by chairing the New Haven Commission on Disabilities and at the national level through the Osteogenesis Imperfecta Foundation. He additionally consults for MIT Solve, a social innovation marketplace, on social impact data modeling.

Billy holds Bachelor’s degrees in biology and history from MIT as well as an MBA from the Yale School of Management. We are excited to welcome Billy as a member of the OIF Board of Directors!

Nominate an OIF Board Member
The OI Foundation is always seeking nominations for new members of the OIF Board of Directors. The Board Development Committee looks for nominees with qualities such as a personal connection to OI and experience in areas including accounting, finance, fundraising, organizational management, public relations, strategic planning, business and/or law. If you or someone you know is committed to achieving the mission of the OI Foundation please contact the OIF at bonelink@oif.org.