OIF Regional Conference: Kansas City, MO

Save the Date! OIF Regional Conference: Kansas City
Saturday, November 5, 2022
The OIF is excited to announce the next Regional Conference will be held in Kansas City, Missouri, on November 5! This 1-day meeting will be co-chaired by Dr. Eric Rush and Dr. Jean-Marc Retrouvey and will be held at the Embassy Suites by Hilton Kansas City Plaza. Speakers will present on topics related to understanding and treating OI and will address pediatric and adult health concerns. More information and registration will be available at www.oif.org/event/regionalkc.

50th Anniversary Celebration

 

OIF Accomplishments

Dear Friend,

We are thankful for the generosity of community members who have supported the work of the Osteogenesis Imperfecta Foundation! We hope you will take a moment to read about the OIF’s exciting accomplishments of the past year and once again make a contribution to the OI Foundation. Your support allows us to continue adding to the many new and ongoing programs and activities as we strive to improve the quality of life for individuals living with OI through research, education, awareness, and mutual support.

Eugene Washington PCORI Engagement Award
Under the direction of OIF Medical Advisory Council member Dr. Laura Tosi, the OI Foundation recently completed our 3rd Eugene Washington PCORI Engagement Awards, through the Patient-Centered Outcomes Research Institute (PCORI), Leveraging Virtual Communication to Advance PCOR Adoption by the Rare Bone Disease Community. This award brought together members of the Rare Bone Disease Alliance (RBDA) with stakeholders from the patient and scientific communities in a series of focus groups and large group meetings to examine barriers to participation in research, barriers to access to care, and patient-identified issues that need to be reflected in the development of patient-reported outcomes. The OI Foundation is currently administering our latest award, Preparing Adults with Osteogenesis Imperfecta to Engage in Research on Access and Quality of Care for Their Rare Disease, which is exploring the problems that individuals with OI have as they transition from pediatric to adult care. Over the next year, we will be hosting a series of listening sessions to explore challenges a patient may encounter when seeking primary and specialty care, difficulties pediatric OI clinics have as they seek to successfully transition their patients to adult care, and barriers that existing adult OI clinics encounter as they seek to provide appropriate and high-quality care to adult patients.

Scientific Meeting
We were very excited to resume the OIF’s annual Science Meeting in April. 70 scientists and researchers specializing in OI research and treatment came together in person – with an additional 65 attending virtually – for a two-day session to discuss Scientific Advances in OI. This meeting is designed for scientists interested in learning more about the latest in basic and clinical OI research, and how the information could ultimately benefit people living with OI. This year’s meeting, chaired by Dr. Deborah Krakow, featured sessions on the musculoskeletal system, quality of life, stem cell research, cardiopulmonary issues, treatment beyond bisphosphonates and a look at what’s new on the horizon.

OI Clinic Outreach
In an ongoing effort to connect with medical professionals who are currently treating patients with OI and educate them on the resources the OIF provides clinics and their patients, the OIF held a hybrid Town Hall Meeting for OI Clinic and Bone Health Programs in April. We were excited to gather 35 medical professionals in person with another 60 joining virtually for a half day of discussion on mental health, pain management, and pulmonary care. We have created a new quarterly electronic newsletter specifically for this group, which will include important announcements about meetings and resources.

Rare Bone Disease Alliance
The Rare Bone Disease Alliance (RBDA), a program of the OI Foundation, brings together a coalition of fifteen rare bone disease patient advocacy groups. The RBDA is committed to expanding education of rare and ultra-rare disorders and expanding research on the natural history, diagnosis, and treatment of the diseases. The RBDA unites researchers and early-stage investigators by hosting an annual Rare Bone Disease Working Group Meeting, an Early-Stage Investigator Meeting, and a Scientific Symposium. Learn more at www.rbdalliance.org.

Virtual Education Sessions
Since March 2020, the OI Foundation has hosted more than 20 live, virtual sessions connecting OI community members with OI experts to discuss COVID-19 related topics, research updates, and mutual support opportunities. Sessions have included: Information on COVID-19; Mental Health and Wellness; Nutrition and Fitness; Employment Accommodations; COVID-19 Vaccine Updates; Brittle Bone Disorders Consortium research updates; virtual holiday parties and so much more! All OIF virtual sessions have been recorded and are available on the OI Foundation’s website and YouTube channel.

OIF Virtual Conference
For the past three years, the OIF has hosted a Virtual National Conference to help fill the gap between in-person OIF National Conferences. The virtual format has allowed hundreds of new individuals who have not had the ability to attend an in-person OIF National Conference to participate in the most popular informational and social sessions complete with closed captioning and live interpretation in both French and Spanish. In 2022, we utilized an “Ask the Expert” format to allow for a more informal dialogue between OI experts and virtual participants. Session recordings are available on the OI Foundation’s YouTube channel.

OIF National Information Center
This past year, OIF staff responded to more than 11,000 direct inquiries for medically verified information, and an average of 6,000 people used the OIF website each month. Topics range from medical issues such as genetics, diagnosis, and treatments to daily living strategies such as school and employment. Educational materials are available in print and electronically through the OIF website. OIF Virtual Office Hours, every Tuesday and Thursday at noon and 6pm EST, are hosted by OIF Health Educator Jessica Ransome. Individuals are invited to join office hours via Zoom to learn more about OI Foundation programs and resources, ask questions, or just say hello.

Awareness Week
Each year during National OI Awareness Week, OI community members request state proclamations, host events, tell their story, and share social media posts to raise OI awareness. This year, during the week of April 30 – May 7, OIF social media posts reached nearly 100,000 people, we received 22 official National OI Awareness Week proclamations, and 25 OI community members created National OI Awareness Week Facebook Fundraisers. In addition, many individuals participated in Bone China Tea and DoubleGood Popcorn Fundraisers, as well as purchased OIF Unbreakable Spirit® apparel to help share their awareness.

Jeanie Coleman Impact Grants
In partnership with the Children’s Brittle Bone Foundation, the Jeanie Coleman Impact Grant Program was designed and established to provide funding for items that will significantly improve the quality of life for a person who has OI and limited financial resources. In 2022, the OIF was able to fund $136,509 worth of items and services for 18 families. The 2022 grants covered a range of items including: mobility assistive devices, car seats and ASL class.

Your support plays a vital role in what we do, and we hope we can count on your continued generosity. Please consider using the enclosed envelope to make a gift of $50, $100 or more to the OI Foundation or go online at www.oif.org/donate to donate today!

Thank you, as always, for your continued support.
Tracy Hart
Chief Executive Officer
Osteogenesis Imperfecta Foundation

OI Research Update: Longitudinal Study

Join the OIF for a discussion about the Longitudinal Study of Osteogenesis Imperfecta on Thursday, September 22 at 7:00 PM ET

The Longitudinal Study of Osteogenesis Imperfecta, also known as the Natural History Study, is the largest research project ever conducted on people with OI.  With nearly 1000 people enrolled, it has tracked the life cycle of symptoms for people with OI since 2009.  Findings from this Brittle Bone Disorders Consortium (BBDC) study will help medical professionals better understand OI’s impact on individuals at different stages of life and will be used as a foundation for developing guidelines for care.

To help explain this study and answer audience questions, the OIF will be joined by Dr. Reid Sutton, Geneticist at Baylor College of Medicine, Administrative Director and Principal Investigator of the BBDC, and member of the OIF Medical Advisory Council and Board of Directors. Dr. Sutton will discuss the design of the study, its goals, and what researchers have learned so far.

 

CLICK HERE TO REGISTER TO ATTEND

 

This session is part of a series meant to demystify and contextualize medical research from the Brittle Bone Disorders Consortium. Previous research updates can be viewed here.

 

Virtual Conference Recordings Now Available!

To watch session recordings from the 2022 OIF Virtual Conference,
click the session titles below, or visit the OIF’s YouTube Channel.  

2022 OIF Virtual Conference Sessions
Research Update
Transition of Care
Navigating a New Diagnosis
Closing Session 

2022 La Conferencia Virtual (Español)
Actualización de la Investigación
Transición de Cuidar 
Sesión de Cierre

2022 Conférence Virtuelle de la Fondation (Française)
Thank you to the Canadian Osteogenesis Imperfecta Society for sponsoring French interpretation!
Mise à Jour sur l’état de la Recherche
Transition des Soins
Naviguer à Travers un Nouveau Diagnostique
Discours de Clôture

Visit the OIF’s YouTube Channel

Meet OIF Board President, Ted Trahan!

Meet OIF Board President, Ted Trahan!
We are thrilled to welcome Ted Trahan as the President of the OIF Board of Directors!
Ted has been a member of the OIF Board of Directors since 2016, most recently serving as Treasurer. His son Greg was the inspiration for the family joining the OI community, which they have been members of since the San Diego national conference in 1998. Professionally, the bulk of Ted’s career has been with healthcare technology company Medtronic. His roles there span development and manufacturing. Ted currently works in project management. Prior to Medtronic he worked in information management consulting for Anderson Consulting. Ted has a BS in Electrical Engineering from the University of Texas. In addition to the OI Foundation, his other community involvement has included his church, the Boy Scouts and Habitat for Humanity. Ted enjoys sailing on waters large and small. Ted and Sharon, his wife, have two grown children, Greg and Käthe

Share Your Voice in the OIF World Cafe!

The OIF Board of Directors and staff invite you to be our guest at a “World Café” conversation to share your ideas and experiences as the Foundation looks toward the future

As a participant, you will have opportunity to share what Unbreakable Spirit® means to you, and what it might look like to share with a growing community. Information shared in these small group conversations will be gathered and used for subsequent planning to inform the priorities and direction of the OI Foundation.

There are two ways to participate! 

In-person on July 29 in Tampa, Florida. The event will take place from 2pm-5pm at the Embassy Suites—Tampa, USF. To attend, please email Jessica Ransome at jransome@oif.org

Virtually on August 4, 2022 from 6:00pm – 8:00pm ET. To attend, please click here to register today.

If you are unable to attend, but would like to share your opinion, please contact jransome@oif.org.