Category: Uncategorized

“OIF MAC member Dr Hollis Chaney recently participated in a panel discussion on “The Importance of Rare Disorder Advocacy” for rare conditions like OI. You can see a recording of the panel discussion moderated by Greatness Adewumi here: https://youtu.be/KeTZ_Z9N8RE?si=RjSv1HFLi2EqoWWU

Getting to the Hilton Omaha

While the entire OIF National Conference will take place at the Hilton Omaha (located at 1001 Cass Street) attendees are responsible for arranging their own transportation to and from the airport (approximately 2 miles) as well as any outings while there. Below is a list of transportation services in Omaha with their accessibility options:

1. zTrip. A trip between Omaha’s Eppley Airfield (OMA) and the Hilton Omaha costs between $14-$28, depending on time of day and traffic. zTrip is aware of the OIF National Conference and is planning on having their fleet of accessible vehicles at the airport on Thursday, July 18th and Friday, July 19th. There will be signage in the airport directing attendees on where to go to pick up an accessible ride. If you are arriving on Wednesday, please go to the regular taxi cab stand (follow signs for parking shuttle and then turn right when you exit the door). If you are arriving on Thursday, the accessible vans will be in the parking garage (follow signs for Uber/Lyft/rideshare). If you are arriving on Saturday, July 20th, rides may be booked in advance online at https://www.ztrip.com/wheelchair-accessible-vehicles/ or by calling 402-510-5133. For return service from the Hilton Omaha to the airport on Sunday, July 21st or Monday, July 22nd, you can call to schedule your ride. If you have any issues, please email nebraska@ztrip.com.
2. The Hilton Hotel shuttle. The Hilton Omaha has added a free accessible shuttle service to and from the airport Thursday, July 18, Friday, July 19 and the last day of the conference (Monday, July 22). Please note that the shuttle only has one wheelchair accessible space and due to the number of attendees, wait times may be increased. The Hilton Omaha does have a non-accessible shuttle and both shuttles will run on a loop every 30 minutes between the airport and hotel. There are signs in the airport directing passengers to the shuttle pick up location. For information on the hotel shuttle, please call the hotel front desk directly at 402-998-3400.
3. Uber or Lyft. You may schedule a ride through the Uber or Lyft apps. Rides may be scheduled in advance, but it is not necessary to schedule in advance.

Please be aware that Omaha’s Eppley Airfield (OMA) airport is undergoing construction so some areas may be congested. The Omaha Convention and Visitor’s Bureau will have volunteers on hand on Thursday and Friday to help with baggage and to help direct OIF National Conference attendees to transportation options.

The airport has requested that travelers alert their airlines of their accessibility needs in advance so that the airlines can then alert the airport to make sure there is enough staff on hand. Because most conference attendees will be departing on Monday, July 22, please plan for extra time at the airport to go through TSA. TSA will require a detailed inspection of any mobility aids which could result in longer wait times. They have asked us to alert attendees to arrive at the airport 2-3 hours in advance of their boarding time.

With the OIF National Conference 2024 happening this summer, the OI Foundation invited OI community members to attend a webinar on accessible travel. Speakers Aaron Busch and Joshua Werner shared information about research, planning, and commencing a trip for the wheelchair-dependent traveler.

Speakers

Aaron Busch 

Aaron is a seasoned Accessible Travel Specialist with over four years of industry expertise, coupled with a rich twenty-year journey through the lens of a firsthand disability perspective.

Joshua Werner 

Joshua, whose adventurous spirit and life with Osteogenesis Imperfecta has taken him across continents – from the castles of Scotland to the landscapes of South Africa. Traveling with a service dog and a power wheelchair, Joshua’s journey through countries like England, Germany, Ireland, and Canada, as well as extensive travels within the United States, have equipped him with a wealth of practical insights.

The February issue of E-News is here! Read about the OIF National Conference, research updates, and upcoming OIF Events at https://mailchi.mp/oif/feb2024!

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 9^th, 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

Have you read the latest issue of the OIF’s Breakthrough Newsletter?
The December 2023 edition of Breakthrough features a NEW OIF Resource for Adults with OI, OIF National Conference, Scholarship and Grant Opportunities, Programs for Medical Professionals, the OIF’s 2023 Accomplishments, and more! Click the button below to check out this issue.

Click here to read this issue!

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.