OIF’s 2023 Accomplishments

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. Please consider helping the OI Foundation continue our efforts to improve the quality of life for individuals with OI by making an end of year contribution using the enclosed envelope or visiting www.oif.org/donate. Thank you in advance for your support!

Eugene Washington PCORI Engagement Award
Under the direction of OIF Medical Advisory Council member, Dr. Laura Tosi, the OI Foundation continues to administer our Eugene Washington PCORI Engagement Award, through the Patient-Centered Outcomes Research Institute (PCORI), Preparing Adults with Osteogenesis Imperfecta to Engage in Research on Access and Quality of Care for Their Rare Disease (IDD). In the project’s research phase, surveys were sent out to both patient advocacy group leaders and pediatric clinic leaders, interviews were done with leaders of patient advocacy organizations and various medical professionals, and listening sessions were held with members of the OI community including patients, parents, and caregivers. Topics explored in the ventures of this phase included the healthcare needs of young adults with OI transitioning from pediatric to adult care, as well as identification of barriers and opportunities for accessing quality health care across the age span. These methods have helped us to identify major gaps in care transitions and adult care for individuals with OI.

Adult Transition/Somewhere to Go
In October 2023, the OI Foundation brought together rare disease advocates from across the country focused on the issue of transitioning from pediatric to adult care.  Also addressed was the issue of finding quality care for adults with rare diseases.  The Osteogenesis Imperfecta Foundation is leading this effort under the leadership of Dr. Laura Tosi in response to the OI community’s feedback that finding experts or providers with knowledge about OI is very difficult especially when transitioning from pediatric to adult care.  The meeting developed action items and will engage those who attended in this issue over the next year.

Adult Health Toolkit
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. Through this toolkit and online resources, the OI Foundation provides the most up-to-date medically reviewed information possible.

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 13-14, 2023, was chaired by Dr. Kenneth Kozloff (Professor of Orthopedic Surgery at the University of Michigan). The meeting featured over 30 presentations on a wide variety of topics including Energy Metabolism, Growth, OI Organizations, and Emerging Therapies. Following the meeting, OIF Medical Advisory Council member, Dr. Frank Rauch, recorded a video summarizing the key findings for members of the OI community which can be found on the OI Foundation’s website.

Rare Bone Disease Alliance
The Rare Bone Disease Alliance (RBDA), a program of the OI Foundation, brings together a coalition of seventeen (17) rare bone disease patient advocacy groups. The RBDA is committed to expanding education of rare and ultra-rare disorders and furthering research on the natural history, diagnosis, and treatment of these diseases. The RBDA unites researchers and early-stage investigators by hosting an annual Rare Bone Disease Working Group Meeting, monthly virtual TeleECHO sessions, an Early-Stage Investigator Meeting, and a Scientific Symposium. On March 9th, the RBDA hosted their third Virtual Scientific Symposium. In this series, intended for both researchers and clinicians, expert speakers explored the natural history and new developments in osteogenesis imperfecta. More than 100 attendees joined the live zoom presentation. The recording of the symposium can be found on the OI Foundation’s YouTube channel.

Michael Geisman Fellowship Grant
Giulia Montagna, PhD continued her work through 2023 as a Michael Geisman Fellow. The Michael Geisman Fellowship Grant program awards funding up to $50,000 per year, for two years, to postdoctoral trainees who are currently working on projects with clear relevance to Osteogenesis Imperfecta, or who have projects that will enable them to develop expertise in OI research. Giulia Montagna is a postdoctoral research fellow at Boston Children’s Hospital, affiliated with Harvard Medical School. She holds a bachelor’s degree in Biomolecular Biotechnology, a master’s degree in molecular biology and Genetics, and a Doctor of Philosophy in Health Technologies, Bioengineering, and Bioinformatics from the University of Pavia in Italy. Dr. Montagna joins Ellen Busschers and Jennifer Zieba who are currently in the middle of their Geisman Fellowship funding.

OIF Regional Conferences
This past year, the OIF hosted two Regional Conferences in Washington, DC and Phoenix, AZ. 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 and more. Coming in early 2024, the OIF will be hosting two more regional conferences in Nashville, Tennessee and Montreal, Quebec. Check out www.oif.org/conferences to keep up to date with upcoming OIF Conferences.

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 November 2023. During the November meeting, former OIF Board of Directors member, Tracy Mulroy presented the Adult Health Toolkit to those in attendance. These meetings was 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. The OIF also sends a quarterly electronic newsletter specifically to this group, which includes important announcements about meetings and resources.

 OIF Information Center
This past year, OIF staff responded to more than 50 direct inquiries per month regarding medically verified information. Additionally, an average of 6,000 people used the OIF website each month. Topics ranged from medical issues such as genetics, diagnosis, and treatments to daily living strategies such as school participation and employment. The OIF has developed the Navigating a New Diagnosis: A Tool Kit for Parents and Medical Professionals and the OI Adult Health Toolkit. Educational materials are available in print and electronically through the OIF website.

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, supporters used graphics and language from the OIF’s Awareness Week Social Media Toolkit to raise OI awareness on social media. During the week of May 6-13, OIF social media posts reached nearly 100,000 people, and 25 OI community members created National OI Awareness Week Facebook Fundraisers. In addition, many individuals purchased OIF Unbreakable Spirit® apparel to support the OIF and raise awareness. The OI Foundation also hosted a “Chat with the OIF” session with OIF CEO Tracy Hart, Board of Directors President, Ted Trahan, and staff members virtually where community members were able to ask questions and learn more about OIF resources.

OI Support Groups
The OIF Regional Support Group Program will be re-launching in early 2024. 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. This fall, OIF Staff interviewed interested members of the OI Community and selected Regional Support Group Leaders to serve as a contact person for families and individuals looking to connect with the OI community and OIF.

Jeanie Coleman Impact Grants
In partnership with the Children’s Brittle Bone Foundation, the Jeanie Coleman Impact Grant Program was designed to provide funding for items that will significantly improve the quality of life for a person who has OI and limited financial resources. In 2023, the OIF was able to fund $144,550 worth of items and services for 10 families. The 2023 grants covered a range of items and services including: physical therapy assistance, med sleds, and wheelchair accessible vehicles.

Edward D. Cranston College Scholarship
This scholarship is for students with osteogenesis imperfecta who are applying to or have been admitted to a college or university. 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. The OI Foundation is excited to announce the first-year recipients of the Edward D. Cranston College Scholarship: Eden Nadler and Ethan Yamashita! Eden and Ethan were selected from nearly 20 applicants by a committee of OI Foundation Board of Directors members and OI community members. We are proud to support this year’s recipients as they move forward in their education!

As you can see, your support plays a vital role in what we do, and we hope we can count on your continued generosity. With your help, we hope to continue to improve the quality of life for individuals living with OI through research, education, awareness, and mutual support.

Please consider making a gift of $50, $100 or more to the OI Foundation using the enclosed envelope, or online at www.oif.org/donate.

Thank you, as always, for your continued support.

Tracy Hart
Chief Executive Officer
Osteogenesis Imperfecta Foundation

Introducing OIF Medical Advisory Council Chair, Dr. Cathleen L. Raggio

We are pleased to announce that Dr. Cathleen L. Raggio will be the chair of the OI Foundation Medical Advisory Council (MAC) beginning July 1, 2023. Dr. Raggio is a pediatric orthopedic and spine surgeon who specializes in skeletal dysplasias (i.e., osteogenesis imperfecta), and scoliosis.

Dr. Raggio is affiliated with the Hospital for Special Surgery. She graduated from Weill Medical College of Cornell University and completed her orthopedic training at the Hospital for Special Surgery and the Alfred I DuPont Hospital for Children. She has been recognized for her outstanding work through numerous awards including the Castle Connolly 2023 Exceptional Women in Medicine distinction, awarded to those with exceptional leadership, expertise, and dedication in their respective fields. She conducts both clinical and basic science research as a clinician scientist.

As a longtime OI Foundation MAC member, Dr. Raggio has volunteered her time and expertise to review OI Foundation publications, and to advise the OI Foundation’s CEO, staff, and Board of Directors on the implications of new research discoveries and new medicines or treatments related to OI. She has been featured as an OI expert speaker at OIF National and Regional Conferences, Support Groups, Scientific Meetings, and more.

Being a MAC member is a great honor and responsibility. It is the best example of team work and  collaboration for a common purpose (advancement of care for the OI community) that I can imagine.” – Dr. Cathleen Raggio

Thank you, Dr. Raggio, for all of your contributions to the OI Foundation and OI community. We are honored to introduce you as the Chair of the OI Foundation Medical Advisory.


 

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