COVID-19 Vaccine Resources

The OI Foundation is making every effort to provide the most up to date information about the COVID-19 pandemic for the OI community. Results from the OIF’s second COVID-19 Survey  found that 81% of those not yet vaccinated say they will definitely or likely get the vaccine once available to them. We would like to encourage you to check out the  Vaccine Finder below to assist with searching for vaccines in your area. The Vaccine Finder is a resource operated by Boston Children’s Hospital and supported by the Centers for Disease Control and Prevention and the United States Digital Service. Resources like the Vaccine Finder are one of many included in the OIF’s COVID-19 Tookit.  If you have questions about COVID-19 and OI, please contact the OIF at bonelink@oif.org.

National Osteogenesis Imperfecta (OI) Awareness Week begins Saturday, May 1!

How will YOU raise OI awareness this week?
National OI Awareness Week is scheduled around Wishbone Day (May 6), the international day of OI awareness. There are so many ways to raise OI awareness during OI Awareness Week and Wishbone Day – check out some ideas below!

Raise OI Awareness 

Raise OI Awareness on Social Media
Last year, we reached more than 200,000 people on social media during National OI Awareness Week! We need your help to reach even more this year! Be sure to like and share our #SHAREforAWARENESS posts on Facebook, Twitter, and Instagram pages throughout the week!


Update your Facebook Profile Picture! 

Use your Facebook page to raise OI awareness! Click here to add a National OI Awareness Week frame to your Facebook profile picture!


Share Your OI Story

One of the best ways to raise awareness of osteogenesis imperfecta is to share your OI story and experiences. Gemma’s Corner, created in memory of OIF Founder Gemma Geisman, is a place where OI community members can share their OI story, as well as listen to others. Click here to listen to OI community member stories in Gemma’s Corner. We want to hear from you! To share your story, please record a 3 to 5 minute video and send it to jransome@oif.org. For more information, or if you need assistance recording or sending in your video, please contact the OI Foundation.


Support the OI Foundation

Create a Facebook Fundraiser
Invite your family and friends to join you in raising OI awareness and supporting the OI Foundation during National OI Awareness Week by creating a fundraiser for the OI Foundation on Facebook! Click here to get started!

Double Good Popcorn Fundraiser
Whether you are into salty or sweet, this awareness week fundraiser has something for everyone! Double Good popcorn is not only delicious but 50% of the sales go towards supporting the mission of the OI Foundation when you purchase from the OIF’s virtual popcorn store or create a store of your own! Here’s how to get started:

  1. Download the Double Good app
  2. Create your own pop up store using the OIF’s code: TJHSBQ
  3. Invite your friends and family to purchase popcorn from your pop up store in support of the OI Foundation from Monday, May 3 – Friday, May 7!

Interested in ordering Double Good popcorn? The OIF Popcorn store will be open May 3-7!

 

Bone China Tea
Bone China Tea participants can contribute to the OIF’s awareness, support and research efforts by enjoying a cup of tea in the comfort of their own home. The best part is, there is no event to plan! Simply invite your guests to enjoy a relaxing cup of tea at home and then make a gift to the OI Foundation with the money they may have saved by not going out to a real event.

While planning your Bone China Tea, you have the option to mail physical invitations to your guests, or hold the event completely online. Start planning your Bone China Tea event at www.oif.org/campaign/bonechinatea/


 

Mark Your Calendar

May 1, 2021
Virtual Bone China Tea Party

Sip, Sip, Hooray! Please join the staff of the OIF and OI community member, Susie Wilson, for a virtual tea party on May 1st for Bone China Tea Day during National OI Awareness Week. Bring your finest china and freshest baked good for warm conversation and togetherness on May 1 at 3:30pm ET. Dress to impress… your mug that is! During the event, we will take a poll of best teacup and the winner will receive a prize. All ages are welcome to attend. To register for the event, please visit www.oif.org/event/virtualbonechinateaparty/

May 6, 2021
Wishbone Day (International OI Awareness Day)

Wear your yellow in celebration of Wishbone Day! Each year on Wishbone Day, the OI Foundation shares facts about OI on social media every hour. Make sure you are following the OI Foundation on Facebook, Twitter, and Instagram so you can help us raise OI awareness worldwide by liking and sharing every #SHAREforAWARENESS and #OIstrong post!

May 6, 2021
The Current State of OI Research: An Update for the OI Community

There is more OI research being done now than ever before, and the complex findings and breakthroughs can be hard to decipher. Join the OIF in the first of a new series as we demystify and contextualize medical research in The Current State of OI Research: An Update for the OI Community. This series kicks off on Wishbone Day, May 6 at 6pm ET with a conversation between Cameron Penn, President of the OIF Board of Directors, and Dr. Brendan Lee MD, PhD, Principal Investigator of the Brittle Bones Disorders Consortium and OIF Medical Advisory Council Member. Click here to register to attend.

 

We can’t wait to celebrate National OI Awareness Week with you!

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 www.oif.org/OIregistry to be the first to hear about these opportunities. For questions, contact the OIF via email: bonelink@oif.org 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.”
– CHAZ KELLEM

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 https://oif.org/event/virtualbonechinateaparty. Questions? Contact Christina at cteurfert@oif.org