The Results Are In!

Tremendous thanks to the 649 community members who completed the OIF’s second COVID-19 survey. Our COVID-19 surveys are essential to tracking how the pandemic is impacting the OI community. To read the full survey results report published in the the OIF’s Breakthrough newsletter, please click here.

Please watch out for survey number 3! To complete future surveys about OI, we highly encourage you to sign up for the OI Registry at to be the first to hear about these opportunities. For questions, contact the OIF via email: or telephone: 301-947-0083.

To read the full survey results report published in the the OIF’s Breakthrough newsletter, please click here.


Reminder – Stay Active!
The OI Foundation’s second COVID-19 Survey found that 61% of respondents are less physically active now than they were before the pandemic started. It is our goal to provide community members with resources to stay healthy during this time. We encourage you to check out the following informational resources on physical activity:

To read the full survey results report published in the the OIF’s Breakthrough newsletter, please click here.

Our Commitment to the OI Community

In July 2020, the OI Foundation released a statement affirming our commitment to diversity, equity, and inclusion initiatives at the OI Foundation. We realize change starts with us and we are conducting 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.

We are proud to partner with diversity, equity and inclusion professional (and OI community member!), Chaz Kellem.

“In the past year, the OIF board of directors and staff took a long, hard look at our programs and how we’re engaging all members of the OI community. That exploration led us to Chaz Kellem. As an OI community member, Chaz not only has an intimate understanding of the OIF’s mission, but he’s also an expert in developing and sustaining engagement efforts at the local, regional and national levels, across diverse constituencies. We know Chaz’s people-first approach will identify and address opportunities within the OIF, so we can better drive transparency, understanding and accountability.”
– CAMERON PENN, OIF Board President

Chaz has ten years of experience as a diversity, equity, and inclusion professional. He currently serves as the Director of PittServes, a program that provides University of Pittsburgh students the opportunity to engage in ethical and sustainable service to the community on a local, national and international scale. Chaz is active and committed to the community, as he serves on several non-profit boards including ACHIEVA, Best Buddies PA and Miracle League of Moon.

“It is such an honor to work with the Osteogenesis Imperfecta Foundation as we explore diversity, equity, and inclusion initiatives within the organization. The team is putting in hard work to assure our programs and services are accessible and available for the entire OI community.”

The OI Foundation is thrilled to have Chaz on our team as we continue our work to support the entire OI community.

OIF Breakthrough Newsletter: Spring 2021

OIF Breakthrough Newsletter: Spring 2021

Have you had a chance to read the latest issue of Breakthrough? The most recent newsletter features important updates from the OI Foundation including:

  • National OI Awareness Week
  • OIF Virtual Conference 2021
  • COVID-19 Resources and Survey Results
  • Programs for Medical Professionals
  • Current Research
  • OIF Information Center Updates

Click here to read this issue of Breakthrough!

Kick off OI Awareness Week by attending a Virtual Bone China Tea Party!

On Saturday, May 1st kick off National OI Awareness Week by joining the OI Foundation and Bone China Tea Chair Susie Wilson for a Virtual Bone China Tea Party! Attendees will learn about OI, hear from members of the OI community, participate in live raffles, play games, and compete for best teacup! What is Bone China Tea? Bone China Tea is a year-round fundraising campaign dedicated to raising awareness and supporting research efforts for osteogenesis imperfecta. Invite your friends and family to enjoy a relaxing cup of tea at home while supporting the OI Foundation.

To register for the virtual tea party or learn more about Bone China Tea, visit Questions? Contact Christina at

You’re invited to the first-ever Baubles & Bubbles for Better Bones event!

Please join former OI Foundation Board of Directors member, Robin Wright, for a special behind-the-scenes tour of the Sotheby’s Magnificent Jewels auction. OI community members, friends and family will have a special all-access pass for this one-of-a-kind virtual event on Tuesday, April 13th from 6-7pm ET.

During the virtual event, enhance your viewing with a bottle of Sotheby’s Champagne, Blanc de Blancs, Grand Cru* and Godiva Assorted Chocolates gift box. Champagne and chocolate will be shipped to your home prior to the event, the cost of which is included in the package.
*Or a comparable bottle

To register for this event, or to order your champagne and chocolate package, please visit

LAST CALL! COVID-19 Survey Closes Wednesday

As a follow-up to the survey in July 2020, the OI Foundation has created a second survey focused on how the COVID-19 pandemic continues to impact the OI community.

More than 500 OI community members have completed this survey. If you have not taken the survey yet, we need to hear from YOU! Please take a few minutes to complete the survey today to help the OIF better understand and serve the OI community in 2021. Survey results will be shared on the OIF website and Breakthrough newsletter this spring.

This survey will close on Wednesday, March 24, 2021.