Category: Updates from the OIF

OI Research Update: Ultragenyx Orbit and Cosmic Phase 3 Study Enrollment is Complete

Posted on by Gabriela Beug

We are pleased to share exciting news from our partners at Ultragenyx. They have completed enrollment for their Phase 2/3 Orbit and Phase 3 Cosmic studies. These studies evaluate setrusumab (UX143) in both pediatric and young adult patients with osteogenesis imperfecta (OI).

“We would like to thank the OI community for its support, trust and participation as we complete this important step in the advancement of the setrusumab program,” said Eric Crombez, M.D., chief medical officer at Ultragenyx.

For more information about the studies and what this development means for our community, please visit https://ir.ultragenyx.com/news-releases/news-release-details/ultragenyx-announces-completion-enrollment-phase-3-orbit-and

Members are the Heart of the OI Foundation

Posted on by OI Foundation

Dear Friend,

Greetings! Thank you for being an active supporter of our OI community! OI Foundation members make up the heart of our organization. As one of our dedicated supporters, we hope you will consider joining or renewing your membership for the 2024-2025 membership year. Our continued success is only possible due to your generosity and commitment to our mission – the future of the Osteogenesis Imperfecta Foundation depends on you!

Please consider becoming a member of the OI Foundation to continue the legacy of families and individuals living with OI determined to find answers.

OI Foundation Member Marnie Starkey shares why being a member of the OI Foundation is important to her and her family below.

“We have met so many new friends through OIF events like the National Conference and Regional Support Group meetings. Being a part of the OIF allows us to not only benefit from programs and resources, but also allows us to help others with OI!” Marnie Starkey (member since 2019)

Your OIF membership will help provide medically verified information on OI to medical professionals, parents, caregivers, and individuals living with OI. It will give opportunities for people with OI to connect through the OIF website, social media sites, local support groups, and the OIF National and Regional Conferences. Lastly, it will accelerate the pace of OI research through scientific and clinical meetings and by funding new young investigator grants.

Take a moment to learn more about the four different membership levels below.

There are four different membership levels that include the following:

BRONZE – $36
• Exclusive OIF program update meeting
• Annual subscription to Breakthrough
• Voting privileges at Board Member elections

SILVER – $100
• OI Foundation drawstring bag
• Exclusive OIF program update meeting
• Annual subscription to Breakthrough
• Voting privileges at Board Member elections

GOLD – $365 ($1 per day!)
• OI Foundation drawstring bag
• Exclusive OIF program update meeting
• Annual subscription to Breakthrough
• Voting privileges at Board Member elections
• Complimentary ticket to an OIF fundraising event of your choice or a complimentary registration to an OIF Regional Conference 2024-2025

1970 Society – $1,000
• OI Foundation drawstring bag
• 1970 Society lapel pin
• Exclusive OIF program update meeting
• Annual subscription to Breakthrough
• Voting privileges at Board Member elections
• Complimentary ticket to an OIF fundraising event of your choice or a complimentary registration to an OIF Regional Conference 2024-2025 (does not include National Conference)

The OI Foundation owes its success to its loyal, supportive members; the organization’s future depends on you! I hope that you will consider joining the OIF or renewing your membership. Your membership enables us to continue offering the exemplary services we provide to all individuals affected by OI. Together, we truly do have an Unbreakable Spirit®.

Sincerely,
Tracy Hart
Chief Executive Officer

Please consider becoming a member of the OI Foundation by visiting www.oif.org/membership.

Proclaim National OI Awareness Week 2024 in your State!

Posted on by OI Foundation

We need YOUR help to proclaim National OI Awareness Week (May 4 – 11, 2024) in every state!

To request a proclamation in your state, follow the steps below.

  1. Click on your state below.
  2. Suggested Proclamation Request Language and Suggested Proclamation language are available here. If required, you may copy/paste this into your proclamation request form.
  3. When you receive your proclamation, please send an electronic version to gbeug@oif.org. If you did not receive an electronic version, please send a photo of the mailed proclamation.

Alabama
Alaska
Arizona
Arkansas
California
Colorado
Connecticut
Delaware
Florida
Georgia

Hawaii
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Maine
Maryland

Michigan
Minnesota
Mississippi
Missouri
Montana
Nebraska
Nevada
New Hampshire
New Jersey
New Mexico

New York
North Carolina
North Dakota
Ohio
Oklahoma
Oregon
Pennsylvania
Rhode Island
South Carolina

South Dakota
Tennessee
Texas
Utah
Vermont
Virginia
Washington
Washington, DC
West Virginia
Wisconsin
Wyoming

If you have any questions, please contact Gabriela at gbeug@oif.org.

 

Edward D. Cranston College Scholarship Program

Posted on by OI Foundation

Applications are now available for the Edward D. Cranston College Scholarship 2024!

This scholarship, created in honor of OI Community Member Edward D. Cranston, is for students with osteogenesis imperfecta who are applying to or have been admitted to a college or university. Edward was born in 1962 with severe OI and challenged himself by pursuing all educational opportunities available to him to achieve his goal of working as a health care professional. He has dedicated his career to working with children with complex respiratory conditions and is currently held in high regard both by professionals in the field, as well as the families of the many children with whom he has worked.

Applicants must articulate a need for scholarship assistance to meet their academic goals, be committed to full-time college enrollment and show proof of enrollment in college to receive the funds. Preference for the scholarship is based on a combination of merit and financial need. Applicants are required to submit at least two letters of recommendation, their most recent official transcript, and a personal essay along with the application form.

Click here for the application.

All applications must be submitted by April 17, 2024. If you have any questions please contact Stacie at sconnors@oif.org.

A Message from Tracy Mulroy

Posted on by OI Foundation
The Osteogenesis Imperfecta Foundation is pleased to introduce the Adult Health Toolkit: Information for Adults Living with OI, Their Families, and Medical Professionals to help you navigate the many aspects of managing your health as an adult living with OI.
Watch a video message from Tracy Mulroy (former OIF Board Member, Chair of the Jamie Kendall Fund for Adult Health, and OIF Adult Health Initiative Community Chair), who has played an instrumental role in the creation of this toolkit. In this video, she explains the importance of this resource, as it provides adults with OI and their caregivers with the knowledge to help educate your healthcare providers and to effectively advocate for your health care needs.
Learn more and view the toolkit at www.oif.org/adulthealth.

Impact Grant Program

Posted on by OI Foundation

Jeanie Coleman Impact Grant Program

The Jeanie Coleman Impact Grant Program provides equipment and services that improve the quality of life for families living with OI. The program is funded by the Children’s Brittle Bone Foundation (CBBF)

Items that have been awarded in the past include (but are not limited to) wheelchairs and ramps, hearing aids, technological devices (laptops, tablets), home adaptation, and accessible vans.

The next Impact Grant cycle will open in January 2025. If you have any questions please contact Stacie at sconnors@oif.org.