OIF National Conference 2024

Thank you for joining us at OIF National Conference 2024 in Omaha, Nebraska!

We want to hear from you! Please take a moment to provide your feedback by filling out the OIF National Conference Evaluation Survey! Your feedback will help shape future OIF Conferences. Click here to complete the survey.

Recorded Sessions:

Please click the session titles below to watch session recordings.

Opening Session
*Keynote address will be available soon!*

Research Update

Understanding and Managing Pain in OI

OIF National Conference 2026 will take place at the Rosen Centre Hotel in Orlando, Florida!

OIF National Conference – Join Us on Zoom!

The OIF National Conference is this weekend!  

From July 19th – 21st, members of the OI community will come together for three days of specialized sessions on managing OI, panels on living well with OI, peer to peer sessions, and fun social events for attendees of all ages! If you are joining us in Omaha, we can’t wait to see you!

Unable to attend? Click on the session titles below to register to join us virtually on Zoom!

Opening Session (Friday, July 19, 2024 3:30 PM Central Time)
Research Update (Saturday, July 20, 2024 9:00 AM Central Time)
Plenary Session: Understanding and Managing Pain in OI (Sunday, Jul 21, 2024 9:00 AM Central Time)

Meet OIF Board President, Christine Rossi!

We are thrilled to welcome Christine Rossi as the President of the OIF Board of Directors!

Christine (Wyman) Rossi is a Senior Vice President at reacHIRE, an organization that puts people back to work into Fortune 500 companies after taking career breaks. She has had a 20+ professional career focused around recruiting and development of people at all ages and stages within various businesses & corporate industries. Christine has type I OI as does her father, sister, niece and son and has been volunteering within the OIF for 21 years including 2 stints on the Board of Directors (2003-2009) and (2019-present). She is the current OIF Board of Directors President. Christine started the Unbreakable Spirit® Walk OI in 2005 and took it national in 2007. After 12 years and over $1,000,000 raised, she retired the Boston fundraising event and launched the Strong Bones Gala Boston in 2018 now in its 7th year focused on research around adult health cardiac issues of people with OI. Christine comes from a legacy of committed volunteers specifically her father Dick Wyman who has been heavily involved with OIF since the early 80s. Christine lives in Ashland, MA married to John and has two boys Jack & Hugo.

The OIF is pleased to announce the appointment of four new board members!

The Osteogenesis Imperfecta Foundation (OIF) is pleased to announce the appointment of four new board members, Dr. Kara Ayers, Julie Hocker, Tony Jacobsen, and Cindy Medina.

“We are thrilled to welcome these accomplished individuals to our Board,” said Tracy Hart, CEO of the OI Foundation. “The new members bring a wealth of expertise and diverse perspectives that will undoubtedly contribute to the mission of the OI Foundation.”

The Board Development Committee searches for nominees with a personal connection to osteogenesis imperfecta and experience in one or more of the following areas: accounting, finance, fundraising, organizational management, public relations, strategic planning, business or law. Board members commit to two onsite board meetings per year (8-12 hours each), one teleconference board meeting per year (3 hours) and 8-10 hours per month of committee or task force assignments. Members of the OI Foundation Board of Directors serve three-year terms.

Learn more about the new Board Members below!

Dr. Kara Ayers is an Associate Professor and the Associate Director of the University of Cincinnati Center for Excellence in Developmental Disabilities at Cincinnati Children’s Hospital Medical Center. She is trained as a psychologist and leads the National Center for Disability, Equity, and Intersectionality. Dr. Ayers’ research interests include health equity, disability ethics, and parenting with a disability. She enjoys applying what she learns through research by educating policymakers about ways we can improve outcomes through better policies for all.

Julie Hocker is a Director of Public Health at Guidehouse. Ms. Hocker leads advisory work for federal, state, industry, and nonprofit executives and experts who are transforming the lives of Americans with disabilities, complex medical conditions, and rare diseases. Most recently, she has been instrumental in reimagining how regulators, researchers, pharmaceutical companies, and patient groups can transform their partnerships and interactions to accelerate the development and approval of life-saving treatments for ultra-rare conditions and underserved populations. Prior to joining Guidehouse, Ms. Hocker served as the U.S. Commissioner on Disabilities. As Commissioner, Ms. Hocker directed the nation’s leading agency, the Administration on Disabilities at the Department of Health and Human Services, charged with executing a $375 million budget and ensuring the nation’s 60 million Americans with disabilities have access to the services and supports they need to live in their communities and fully pursue the freedoms and rights we all enjoy.  Ms. Hocker earned her Master of Business Administration from the University of North Carolina at Chapel Hill and resides in Arlington, Virginia.

Tony Jacobsen (O.I. Type 1) is the author of “Disable Your Disability: Live the Healthy Life You Deserve!” and a certified personal trainer specializing in empowering individuals with disabilities. Tony is committed to helping people lead healthier, more fulfilling lives regardless of their limitations. When he’s not busy coaching clients, you can catch him energizing audiences as a motivational speaker, spreading his message of resilience and possibility. In addition to his professional pursuits, Tony actively supports the O.I. community by hosting monthly online group meetings and dreaming up creative ventures to bolster support and foster connections. Tony is all about spreading positivity, pushing boundaries, and having fun while doing it. He’s ready and excited to amplify the OIF’s already tremendous support for empowering, educating, and advocating for those touched by Osteogenesis Imperfecta.

Cindy Medina I am a mother and healthcare executive in Houston, TX. In both my personal and professional life, I have a passion for improving access to quality healthcare and improving overall quality of life! Currently, I hold the role of Chief Operating Officer for Fairmont Healthcare. Throughout my career I have honed my skills in strategic planning, budget management and community engagement. But what sets me apart is my passion for using those skills to make a positive impact in the world. I have co-chaired fundraising events, led a Girl Scout troop and even developed a scholarship program for a youth volleyball team. I also take immense pride in coordinating the best care possible for my son with special needs. All of these experiences have taught me that with passion, dedication, and commitment, parents can accomplish extraordinary things in both our personal and professional lives. Because of this and the meaningful impact the OI Foundation has made on my family, I am deeply committed to advancing the mission of the OI Foundation!

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

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