Kids Social Zoom: OIF Virtual Costume Party

Kids Social Zoom:

OIF Virtual Costume Party

October 29th | 6pm EST

We had so much fun this summer during the kids zoom social at this year’s virtual conference! What better way to bring in the fall season than with a virtual costume party?

Join us Friday October 29th at 6pm EST for the Kids Social Zoom: Virtual Costume Party. Your child will have the opportunity to socialize with old friends and make new ones, play Halloween-themed ice breaker games, and so much more!

POSTPONED: COVID-19 Vaccine Update Virtual Session

OIF Virtual Session: COVID-19 Vaccine Update
DATE & TIME TBD

Due to the changing information and current COVID-19 updates, this virtual session has been postponed. More information about this session, including date and time, will be available as soon as possible.

Join the OI Foundation to hear updates on COVID-19 vaccination news and guidelines for people with OI. In this meeting, pulmonologist and OIF Medical Advisory Council member Dr. Robert “Sandy” Sandhaus will be joined by Dr. Rachel Levine, Assistant Secretary of Health for the US Department of Health and Human Services. During this virtual session, the OIF will ask questions about the current state of the COVID-19 pandemic within the US. Discussion topics will include new and emerging variants, booster shots, vaccine availability for children, and more. The speakers will also be answering audience-submitted questions from registration, so don’t miss out!

You must register (free of charge) to attend. When the date and time of this session are confirmed, you will be notified. This session will be recorded and shared on the OIF’s YouTube channel.


 

OI Research Announcement: Use of clear aligners…

The OI Foundation would like to bring your attention to a research study being conducted by the Brittle Bone Disorders Consortium.

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. We plan to have approximately 57 people take part in this study.

For more information, please contact Dianne Nguyen (BBDC Project Manager) at (713)798-6694 or diannen@bcm.edu.


 

OIF Career Opportunity


The Osteogenesis Imperfecta Foundation is seeking the following:

Position Title:    Manager of Grants and Special Projects – Reports to Chief Program Officer

Position Overview:  The OIF is seeking a qualified person to manage the existing and future relationships with funders and supporters of specific projects that will work toward improving the quality of life for people living with OI.  (www.oif.org)

Projects may include outreach materials for the OI community as well as one time meetings and programs for constituents and medical professionals.  The candidate will also be asked to take the lead staff role in projects as needed.  Funders include pharmaceutical companies, government agencies, and private foundations.

The qualified candidate will also be working with funders to complete reports that confirm successful completion of agreed upon milestones and deliverables and will be working with potential new funders to seek support for new projects.

Position Responsibilities:

  • Manage all paperwork from funders and submit timely reports.
  • Work closely with project leads to be sure all funding requirements are met.
  • Attend all meetings for existing funded projects and serve as administrative lead for coordinating those meetings.
  • Serve as the lead staff person managing the steering committee of the Rare Bone Disease Alliance (RBDA), an OI Foundation program. Duties include communicating with steering committee members, preparing meeting agendas, and coordinating a year-long program calendar of events/activities.  Duties also include submitting funding requests to pharmaceutical companies and other related industries for support of the RBDA.
  • Work closely with Chief Program Officer and Chief Executive Officer to manage the success of the grant funded programs and projects.

Qualifications:

  • The successful candidate will have a Bachelor’s Degree in business, social work, education, or a related field.
  • The successful candidate will have 2 years of experience working with a patient advocacy organization, hospital, or other not for profit organization that works directly with a patient community.
  • Strong written, organizational, and verbal communication skills required.

Position Specifics:

  • The position is virtual and the candidate can be located in any part of the US.
  • The OIF offers a competitive benefits package.
  • Salary is competitive and commensurate with experience.


To apply for this position, please contact Tracy Hart at
thart@oif.org.

 

OIF Unbreakable Spirit® T-Shirt Contest

Help Us Design the Next OIF T-Shirt!

Are you a designer or artist with an Unbreakable Spirit®? Get your creative mind going and enter the OIF Unbreakable Spirit® T-Shirt Contest today! All ages are welcome to enter.

To enter, send your design to cteufert@oif.org by September 30, 2021.

Starting October 7th, we will share the top 5 design entries on our Facebook page for you and your friends and family to vote on. The winning design will be offered on the OIF’s online t-shirt store starting November 1st to help support the work of the OI Foundation and raise awareness of OI.

How to Win

Round 1: Members of the OIF Board of Directors and Staff will select the top five designs based on the following criteria: concept and originality, captures spirit of the OI community, and adherence to design and submission rules and guidelines.

Round 2: Members of the OI community will select their top design via social media as well as through a survey (coming soon). Please note only one vote will count per person but designers and supporters are encouraged to share our posts to get as many likes as possible from October 7st-31st.

The winner will receive acknowledgment in the OIF’s print newsletter, Breakthrough, as well as a FREE t-shirt with their design.

Rules for entry and more information can be found at www.oif.org/tshirtcontest.

 

 

Don’t Miss Your Chance to Make an IMPACT on the Future of OI Research!

Don’t Miss Your Chance to Make an IMPACT on the Future of OI Research!

The IMPACT Survey is the first-ever international survey aimed at capturing and quantifying the real impact OI has on people’s lives. The results from this survey will be used to enable better healthcare services for both children and adults and to support availability of potential future treatments for OI. The Impact Survey will close at the end of this month.

If you have OI, or are a parent/caregiver of a child with OI, WE NEED TO HEAR FROM YOU!

Make an impact on the future of OI research by completing the Impact Survey TODAY at: www.impactsurveyoi.com

 

If you have any questions, please contact the OI Foundation at bonelink@oif.org.

Our Commitment to the OI Community

The OI Foundation has completed the initial phase of the OIF’s diversity, equity, and inclusion project. This first phase was designed to assess the OIF’s programs, activities, and business structures. With the help of diversity, equity and inclusion professional, Chaz Kellem, we conducted an  internal review of our programs and services to determine how we can be more inclusive as a Foundation in order to support the entire OI community.

Some of the goals of the OIF’s diversity, equity, and inclusion project are:
■ To evolve our OI community to reflect the demographics of the locations in which we serve
■ To make sure all members of the OI community are fully aware of and can access the full scope of OIF resources and services
■ To ensure every OI community member, staff member, and board member feels included and fully engaged

The next phase of this project will consist of incorporating OI Foundation staff training and development, business recommendations, board development, community engagement practices, and more. Please stay tuned for updates on this important project!