Author: OI Foundation

Dear Friend,

As we near the end of another wonderful year, we are taking a moment to reflect on the generosity of individuals who have allowed the OI Foundation to continue providing programs and services that benefit all members of the OI community. We hope you will take a moment to read about some of our most exciting accomplishments over the past year as we strive to improve the quality of life for individuals living with OI through research, education, awareness, and mutual support. Thank you in advance for your support!

Cardiac Expert Review Panel
As a Type I collagen disorder, OI impacts nearly every system within the body including the heart, lungs, digestive tract, muscles/joints and teeth. But because OI is a rare disorder, there is still much that experts don’t know about the full impact OI has on other systems in the body. This lack of standard is due to information being scattered and no complete evaluations of the literature concerning pathophysiology, epidemiology, and clinical characteristics. In January, the OIF brought together a group of international OI experts and cardiologists to review all the existing literature and research on cardiac complications in OI. These expert reviewers developed a consensus statement and recommendations for clinical care and compelling research needs. The associated manuscript is set to be published in Journal of Bone and Mineral Research this winter. Expert review panels such as this one can immediately impact health outcomes for patients because their providers will have a better understanding of how OI affects different systems and a standard of care.

Scientific Meeting
Each year, leading scientists and medical professionals attend the OI Foundation Scientific Meeting, a two-day event where attendees collaborate and share research. OIF Medical Advisory Council (MAC) members, researchers in the Brittle Bone Disorders Consortium (BBDC), and other notable researchers and clinicians are invited to attend. This year’s meeting, held on April 17-19, 2024, was chaired by Dr. Charlotte Phillips of the University of Missouri. The meeting featured over 30 presentations on a wide variety of topics including Cardiopulmonary Research, OI Mouse Models, Updates on Non-Type I OI, Partnerships to Advance Research, Clinical Needs and Challenges, and Future Research Directions.

Toolkits
The Osteogenesis Imperfecta Foundation is pleased to announce the publication of 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. This resource seeks to provide adult OI community members with tools to use in healthcare environments and everyday life. The Adult Health toolkit joins the OI Foundation’s Navigating a New Diagnosis toolkit as an effective way for families to learn how to best manage OI at all stages of life. These toolkits are an easy resource to share with providers, teachers and schools and are now available in English, French and Spanish. To date, the OI Adult Health and the Navigating a New Diagnosis toolkits have been accessed electronically more than 21,000 times and with more than 3,500 copies in print. We are excited to announce that the OI Foundation will be publishing our next toolkit – for school age children – in early 2025! To download our toolkits, visit www.oif.org.

OIF National Conference
The OIF hosted its National Conference at the Hilton Omaha in Omaha, Nebraska from July 19th -21st. This was the first in-person National Conference since 2018. The meeting drew more than 500 attendees, 100 of whom received financial support from the OIF through the Impact Grant program and Kasper/Kendall Conference Scholarship fund. Program highlights included the Unbreakable Spirit® Walk-n-Wheel, Women’s Forum, OI Research Update, Pain panel, Fitness and OI, Talent Show, Peer-to-Peer Sessions, Medical Consultations, and Closing Dinner and Dance. The next OIF National Conference will be held on July 23-26, 2026, in Orlando, Florida.

OIF Regional Conferences
This past year, the OIF hosted two Regional Conferences in Nashville, TN and Montreal, QC. Nearly 100 OI community members and medical professionals attended each meeting to connect and discuss a range of OI related topics. Topics at the events included pain management, treatment options for adults and children, physical therapy, orthopedics, dental issues and more. Coming in 2025, the OIF will be hosting three more regional conferences in Atlanta, Georgia, Denver, Colorado and Portland, Oregon. Check out www.oif.org/conferences to keep up to date with upcoming events.

OI Clinic Outreach
In an ongoing effort to connect with medical professionals currently treating individuals with OI and to educate them on the OIF’s resources for clinics and their patients, the OIF held two OI Clinic and Bone Health Town Hall meetings chaired by OIF MAC member, Dr. Laura Tosi in June and December 2024. These meetings represent a unique opportunity for medical professionals who treat patients with OI and those interested in bone health to connect with each other, stay up to date on OI care topics, and learn about OIF resources.

OI Support Groups
The OIF relaunched our Support Group Program with a Regional Support Group Program. The Regional Support Groups are divided into five Regional Groups (Northeast, Southeast, Midwest, Southwest, and West). The groups aim to connect and foster a sense of community among OI community members in a specific region of the United States and to provide national and local resources. The goal of the OIF Support Group Program is to provide a space for sharing, educating, and socializing. Regional Support Group Leaders were selected from applicants who have a history of being involved in OI Foundation programs and serving the OI community. Each Regional Support Group leader underwent training to enable them to be a resource for families and individuals looking to connect with the OI community and OIF. Each Regional Support Group hosts quarterly virtual meetings and helps support the Regional Conferences.

As you can see, your support plays a vital role in what we do, and we hope we can count on your continued generosity. It is not too late to make your tax-deductible donation. Please consider making a gift of $50, $100 or more to the OI Foundation online at www.oif.org/donate. Thank you!

The Osteogenesis Imperfecta Foundation would like to thank those that are making donations through their donor advised funds. Your gifts made through donor advised fund providers like Fidelity Charitable, Schwab Charitable, Vanguard Charitable and T.Rowe Price Charitable are truly appreciated. We continue to update our Guidestar profile to ensure that you are provided with the most up to date information on the OIF but please also continue to visit our website at www.oif.org for information.

For those not familiar with a donor advised fund, here is some information that might be helpful. This information is taken from the Fidelity Charitable’s website as well as from articles written that compare donor advised fund providers.

A donor advised fund, or DAF, is like a charitable investment account for the sole purpose of supporting charitable organizations you care about…like the OIF! A DAF is an investment account that lets you take a tax deduction now and give the money to charity later. When you give money to a DAF, you can deduct that money just as you would deduct a charitable contribution. The DAF invests the money tax-free. At any time, you can direct the DAF to donate some or all of its holdings to the charity of your choice.

You can open a DAF through a donor-advised fund provider. A provider charges an administrative fee to invest your DAF and make donations in accordance with your recommendations. Donor advised funds are the fastest growing charitable giving vehicle in the United States because they are one of the easiest and most tax-advantageous ways to give to charity.

Roger Bache, an OIF donor through his donor advised fund says, “I have found donor advised accounts to be the easiest and most tax-advantageous way to give to charities. Among their many advantages, DAFs allow you to donate appreciated assets, which allows you to avoid long-term capital gains while taking the full tax deduction for your donation”.

How do I set up a donor advised fund and how do I direct my donations to the OIF?

• If you have a brokerage account at Fidelity, Schwab, Vanguard or T. Rowe Price, the easiest thing to do is to open a DAF with your brokerage account. That way, you can manage all your investments in one place. Your advisor at your brokerage firm can assist you with setting up your charitable account.
• Once you set up your account you can donate cash, stocks, or non-publicly traded assets into the account to be eligible for an immediate tax deduction to that account.
• From that account you can then make a gift to the OIF at any time!

If you already have a DAF you can choose the Osteogenesis Imperfecta Foundation as your charity of choice…thank you!

If you have additional questions on donor advised funds you can call our office at 301-947-0083 or you can email us at bonelink@oif.org. Thank you again for supporting the OIF.

The OI Foundation would like to bring your attention to an update from Ultragenyx!

CLICK HERE TO VIEW THE PRESS RELEASE