Month: November 2024

Dear Friend,

Posted on by OI Foundation

Dear Friend,
On behalf of the OI Foundation Board of Directors and staff, I am proud to say that 2024 was an exceptional year for the OI Foundation. Not only did we see the return of our biennial in-person National Conference in July, but we successfully hosted two Regional Conferences in Nashville, Tennessee and Montreal, Quebec. In addition, we held an expert review panel on cardiovascular health in OI and published our New Diagnosis and Adult Health Toolkits in English, Spanish and French. We reached thousands of members of the OI community through social media, newsletters and the OI Information Center. And we have worked closely with industry partners who are leading the way with exciting research.

All of these wonderful things happened because of the support of our generous OI community…people like you…thank you!

As proud as we are of our accomplishments in 2024, we are looking forward to all the work we have yet to do in 2025. And this is where we need your help. We hope you will consider making a gift of $50, $100, $500 or more to help us continue our vital mission to improve the quality of life for those living with osteogenesis imperfecta through research, education, awareness and mutual support.

Here are just a few of the projects we are looking forward to in 2025:

Regional Conferences
In 2025, the OIF will provide OI community members with three new opportunities to gather for a day full of education and mutual support. Regional Conferences offer an intimate in-person educational experience for individuals who may not be able to attend the National Conference or who want to connect with fellow OI community members in their area. Next year, we’re happy to announce we will be coming to Atlanta, Georgia (Children’s Hospital of Atlanta) on February 22nd; Denver, Colorado on May 3rd; and Portland, Oregon in the Fall. At these one-day, in-person conferences, attendees hear from OI medical experts in the region and fellow OI community members in a full day of programming, education and mutual support.

Somewhere to Go
In October 2023, the OI Foundation successfully brought together various stakeholders to explore the issues of transition of care for individuals with rare diseases and gaps in adult care for a meeting titled, “Somewhere to Go for Adults with Childhood-Onset Rare Diseases: Filling Gaps in Care”. At that first meeting it was confirmed by those in attendance that transitioning to adult care from pediatric care, and finding adult providers with expertise in rare diseases, are significant and life-altering issues faced by people with rare diseases. Following the meeting, a landscape analysis of existing transition resources for those with rare diseases was conducted; determining how to measure a successful transition program and identifying how to incorporate and keep telehealth as an important tool in providing care for adults and those transitioning to adult care with a rare disease. In January 2025, the OI Foundation will bring together leaders from the rare bone disease community, individuals living with rare bone disease and physicians to examine the information gathered in the landscape analysis to develop an action plan for improving care transition for those with a rare bone disease and to initiate a discussion of measures of success not just for individual patients but also for advocacy organizations.

Expert Review Panel on Clinical Care Issues in OI
Expert review panels bring physicians and researchers who are experts in osteogenesis imperfecta together with medical specialists from around the world to review any existing literature and research in a specific field and how it relates to OI. These experts develop a consensus statement and recommendations for clinical care and compelling research needs. Expert review panels 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. Following the success of the Cardiovascular Health Expert Review Panel that was held in 2024 – the findings of which will be published early next year – we are eager to host another panel on a topic we have heard from many OI community members is of interest to them – gastrointestinal health.

School Aged Toolkit
In early 2025, the OI Foundation will be publishing a new comprehensive toolkit with information and resources specifically designed for school-aged children, their families, teachers, coaches, and caretakers. Topics will include daycare/after-care programs, extracurricular activities, navigating the school system, transitions between elementary, middle, high school, and college, and age-appropriate language, definitions, and resources for each age group. Like the OIF’s existing toolkits on Adult Health and Navigating a New Diagnosis, the School Age toolkit will be a comprehensive booklet, available electronically and in-print in English, Spanish and French, with information for both patients and providers.

Gemma’s Corner
One of the best ways to raise awareness of osteogenesis imperfecta is to share stories and experiences directly from those who are affected by OI. 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. During the OIF National Conference in Omaha, NE, several attendees took a moment out of their conference weekend to record their stories. We have started sharing these stories and we are looking forward to capturing more OI stories this year and can’t wait to share! If you would like to share your story, please contact bonelink@oif.org.

We have so much to look forward to next year! We cannot do what we do without you and are so grateful for your continued support. Please use the enclosed envelope or go online to www.oif.org/donate to show your support today!

Thank you again for your continued and generous support.

All my best for a safe and happy holiday season,

Tracy Hart
Chief Executive Officer

Donor Advised Funds Support the OIF Throughout the Year!

Posted on by OI Foundation

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.