A Message from Tracy Mulroy

The Osteogenesis Imperfecta Foundation is pleased to introduce 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.
Watch a video message from Tracy Mulroy (former OIF Board Member, Chair of the Jamie Kendall Fund for Adult Health, and OIF Adult Health Initiative Community Chair), who has played an instrumental role in the creation of this toolkit. In this video, she explains the importance of this resource, as it provides adults with OI and their caregivers with the knowledge to help educate your healthcare providers and to effectively advocate for your health care needs.
Learn more and view the toolkit at www.oif.org/adulthealth.

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

Impact Grant Program

Jeanie Coleman Impact Grant Program

The Jeanie Coleman Impact Grant Program provides equipment and services that improve the quality of life for families living with OI. The program is funded by the Children’s Brittle Bone Foundation (CBBF)

Items that have been awarded in the past include (but are not limited to) wheelchairs and ramps, hearing aids, technological devices (laptops, tablets), home adaptation, and accessible vans.

The next Impact Grant cycle will open in January 2025. If you have any questions please contact Stacie at sconnors@oif.org.

A Video Message from Tony Jacobsen

Programs like the OIF National Conference are only possible because of the support we receive from our amazing donors! From connecting with fellow OI community members to learning from OI experts, the OIF National Conference can be a life-changing experience for OI community members. Your support allows us to continue to host these events, as well as provide financial support for families who may not be able to afford to attend. To make a gift to the OI Foundation, please visit www.oif.org/donate.
Take a moment to learn more about OIF National Conference 2024 from OI community member Tony Jacobsen in this video.

Tracy Hart (OIF CEO) shared a letter to the OI community

Dear Friend,

At the end of each year, most of us take some time to reflect…we think about all the good things that happened to us and the challenges we  encountered. When we, at the Osteogenesis Imperfecta Foundation, think about the past year we are overwhelmed with such wonderful memories of being together with so many OI community members and we are so grateful for those moments.

From OIF Regional Conferences, to the annual Scientific Meeting, to exciting community events, the OIF worked hard to move forward in our mission to improve the lives of every person with OI through research, education, awareness and mutual support. Please keep in mind, we cannot do any of this without you! So, let’s reflect a bit on a very exciting year!

Research
The OIF continues to help accelerate OI research with industry partners and research organizations like the National Institutes of Health and the Rare Diseases Clinical Research Network. More and more we are seeing how important it is to hear the voice of the OI community to help advance research and enhance programming. Through awards from the Patient Centered Outcomes Research Institute, the OI Foundation has been conducting a series of research studies to determine what issues are most impactful to the OI community. The results of these studies appear in the Research section of the OIF website.

Through the Brittle Bone Disorder Consortium, studies are being conducted on topics including new medical treatments for OI, the effects of aging with OI, quality of life with OI, pregnancy in OI, craniofacial development in OI and cardiopulmonary outcomes in OI. The OIF also fosters relationships with pharmaceutical companies working on OI and rare bone disease research to ensure our community’s needs are understood. This year, we’ve been able to work with these industry partners on exciting clinical trials for new treatments for OI. The OI Foundation makes sure the
information about these studies is distributed to the OI community in an accessible and transparent manner.

Education
For more than 50 years, the OIF has been proud to provide up-to-date, medically verified information and offer direct support from the OIF Information Center which answers more than 11,000 inquiries annually. The OIF’s online information center features OIF publications and informational fact sheets including Navigating a New Diagnosis: A Tool Kit for Parents and Medical Professionals; What You Need to Know About Clinical Trials; and by the end of this year, the OIF will publish the Adult Health Tool Kit which provides information for adults living with
OI and medical professionals providing care for adults with OI. Visit the OIF website to view these resources as well as the growing number of video resources available on our YouTube channel.

Awareness
Having medical professionals who are well-versed in OI is so important when it comes to providing care for the OI community. To build a strong network of physicians who can provide the latest in medical advancements to their patients, the OIF has been bringing directors of bone health programs across the country together for biannual OI Clinic Town Hall meetings. The most recent of these meetings was held virtually in November. These sessions allow for physicians to compare experiences with specific case studies to better serve the OI community. The OI Foundation has also partnered with 17 other rare bone disease patient advocacy groups that make up the Rare Bone Disease Alliance.

Mutual Support
Sharing information and experiences with others provides a sense of community. Coming together with old and new friends while learning about the newest treatments and research is invaluable when living with a rare disorder. The OIF is so excited that the OIF National Conference is back in person and will be held July 19-21, 2024 in Omaha, Nebraska.  We hope you will visit the OIF website to find out more information and register to attend. Scholarships and financial support are available.

We would also like to share the OIF’s enhanced national OI Support Group program, giving people with OI the opportunity to connect with other OI community members in their area. Look for more information in Breakthrough and OIF E-news to find virtual meetings and in-person gatherings in your area.

This was a wonderful year! We cannot do what we do without you and are so grateful for your continued support. We hope you will consider making a gift of $50, $100, $500 or more to help us continue this vital mission. Visit 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

Wheelchair Travel Guide: Navigating Airports and Flights for Accessible Travel Journeys

Wheelchair Travel Guide: Navigating Airports and Flights for Accessible Travel Journeys

This article was written by OI Community Member Aaron Busch. Aaron brings 20 years of hands-on experience in Accessible Travel to his role as a professional Travel Consultant. He is the founder of Atyzi.com, a platform that equips disabled travelers with resources for secure and inclusive experiences. With a strong track record of booking substantial travel packages, Aaron is dedicated to advocating for the unique needs of his clients. He has also contributed his expertise to notable podcasts like Accessible Media Inc. and Disability After Dark. Aaron specializes in travel solutions that prioritize comfort, accessibility, and enjoyment.

Welcome to this comprehensive Wheelchair Travel Guide, designed to equip you with all the essential information for planning and executing a seamless air travel experience. Specifically tailored for accessible travel, this guide aims to mitigate the risks associated with planning, booking, and embarking on your chosen flights for travelers with mobility challenges.

When taking flights with a wheelchair, understanding your rights under the Americans with Disabilities Act and the Air Carrier Access Act becomes crucial. Equally important are factors like the type of aircraft you will be flying on, as cargo door dimensions can vary significantly. Informing the airline about any specific needs like portable oxygen or pre-clearance for a service animal is also key. Other flight-related considerations include the number of layovers and the time allocated for these connections. Unlike travelers without mobility challenges, you’ll also need to know what professional inspections your wheelchair should undergo before flying and what steps to take if it’s damaged by the airline. This accessible travel guide is designed to bolster your confidence and help you navigate these complexities with ease.

It is not my intent to dictate your travel choices for flights, as you undoubtedly have your own methods and strategies for navigating accessible air travel. Instead, I aim to equip you with comprehensive information that you may review, learn from, and potentially integrate into your existing approach. The objective is to help you identify any overlooked elements that could enhance your accessible travel experience, thereby ensuring a safer and smoother journey to your destination.

Essential Tips for Planning Accessible Flights

It’s essential to understand your rights under two main legislative frameworks: The Americans with Disabilities Act (ADA) and the Air Carrier Access Act (ACAA).

  • ADA: Although broad in its scope, the ADA ensures that businesses must provide equal accessibility for individuals with disabilities. While it doesn’t strictly cover airlines, it does cover airport facilities.
  • ACAA: The Air Carrier Access Act (ACAA) is a comprehensive U.S. federal law that provides a wide range of protections for passengers with disabilities during air travel. It goes beyond the scope of the ADA by directly regulating the airlines themselves, covering everything from boarding procedures to in-flight accommodations and services. This act ensures that individuals with disabilities have the right to travel with dignity, safety, and equal access.

Wheelchair Dimensions and Aircraft Types

Knowing your wheelchair’s dimensions isn’t just for your own planning—it’s often required by airlines at the time of booking. Measure the height, width, and length of your wheelchair as it will be when transported, which means without any easily removable parts like footrests or the headrest.

Key Point: Airlines typically require these measurements at the time of booking, and you may be asked to provide them in either imperial or metric units depending on your intended route. The Airline should have this information on hand. If you end up booked on a plane that is too small to accommodate your wheelchair in its transportable state, you may face challenges such as being deplaned, rebooked, or receiving your wheelchair damaged at your destination. In addition to dimensions, it’s also crucial to be aware of your wheelchair’s weight. Airlines may have weight limitations for mobility devices, and exceeding these could result in extra fees or the need for special arrangements.

Advance Communication with the Airline
When flying with a wheelchair, it’s crucial to communicate with the airline well in advance for certain accommodations. Here are key items that often require airline pre-clearance:

  • Special Equipment: If you intend to bring special medical equipment like a portable oxygen concentrator or a CPAP machine, inform the airline at least 48 to 72 hours before your flight. Airlines may require that your equipment meet specific guidelines or be of approved brands.
  • Specific Battery Types: Power Wheelchairs are normally equipped with batteries that are “Gel Sealed” or “Lithium-ion”. You’ll still need to report it to the Airline, but they don’t normally need pre-clearance. “Wet” batteries on the other hand need to be reported and stored in a manner that won’t spill during your flight.
  • Service Animals: Domestic flights in the U.S. typically don’t require pre-approval for service animals, thanks to the Air Carrier Access Act. However, the animal must be leashed and well-behaved. For international flights, regulations vary by country and may include vaccination requirements, quarantine periods, or specific certifications. Always check both the destination country’s regulations and the airline’s policy.
  • Medical Approval: If you’ve recently undergone surgery, require portable oxygen, or have severe allergies, you’ll generally need medical approval 7-10 days before your flight. This involves submitting a doctor’s note for review, after which the airline may issue a “fit to fly” certificate.
  • Companion Discounts: Companions aren’t always a preference, but a medical necessity. Some Airlines offer discounted or complimentary tickets in such a scenario where a supplemental seat needs to be purchased.

Key Point: Don’t leave anything to chance. If you aren’t convinced, reach out to the airline to pre-clear this information at least 72 hours before your flight. This will ensure you do not encounter any interruptions.

Pre-Flight Maintenance: Safeguarding Your Power Wheelchair
The importance of pre-flight wheelchair inspection is often overlooked. Many assume that airlines will readily compensate for any wheelchair damage incurred during travel. While airlines are indeed liable, they may reject your claim by contending that the damage was pre-existing. A professional inspection of your wheelchair before your flight offers documented evidence to refute such claims, should the need arise.

“Bulkhead” Seating and Added Costs
The Bulkhead section is designated for travelers with disabilities. These seats offer enhanced legroom and are located close to the lavatories. Importantly, requesting these seats is not a matter of luxury; it’s your legal right under the Air Carrier Access Act (ACAA). Under this legislation, airlines are also prohibited from levying additional charges for transporting your mobility device and its associated components.

Some Airlines also offer Priority Seating options specifically for travelers with mobility challenges. These seats are usually located near the entrance of the aircraft, making it easier for you to board and disembark. While the specifics can vary from one airline to another, Priority Seating often offers easier access to the aisle and may come with armrests that can be lifted for easier transfers.

Embarking on your Journey

Airport Assistance and Airlines’ Duties
You’ve successfully navigated to the airport—so what comes next? Airports offer a range of amenities, including Curbside Assistance and Short-Term Parking, but the services available can differ. For those landing at major hubs like Hartsfield-Jackson Atlanta International or Denver International Airport, inter-terminal shuttle transportation is often necessary. Therefore, allotting extra time for this part of your journey is a wise move.

In addition to the pre-mentioned inspection, take further preventative measures to safeguard your device. Detach easily removable components and keep them with you in the plane’s cabin. Use zip ties to secure any exposed or loose wires, reducing the risk of damage or hazard. Protect fragile elements like joystick controls with padded covers, especially since cargo can shift during flight. Lastly, if your wheelchair has a freewheel mode, activate it for more straightforward manual handling by Ramp Agents, and provide them with instructions for re-locking the brakes.

Whether you travel with a manual or a power wheelchair, your transfer to an airport-provided wheelchair or aisle chair will be customized to your specific needs. Airports may employ specialized lifting equipment or hands-on assistance, depending on available resources and your unique physical constraints. Once you reach the plane, you have several options. You can walk down the jet bridge (if able), wheel up to an accessible seat to transfer, or using an aisle chair. Should you opt for the aisle chair, airport personnel will assist in physically lifting you into the chair, fastening safety straps to secure you in place. Arriving well ahead of your flight offers the advantage of pre-boarding, allowing you to bypass the stress of boarding amidst the general passenger rush.

The Importance of Communication
Clear communication is crucial when traveling with a wheelchair, yet often you only get one chance to specify handling instructions—at your departure airport. You must request to speak to the Ramp Supervisor before you start the loading process. You have that right. You need to be armed with all the necessary information prior to loading which includes powering on the device, operating sensitive mechanical features such as tilt, recline, and elevate, throttling the speed, disconnecting the joystick cable in an accessible place, engaging and disengaging the brakes, as well as informing the team if your wheelchair has a light package installed. You can’t assume that the Ramp Agents will know these things.

Despite these efforts at the departure point, it’s important to acknowledge the limitations. Due to security and operational policies, you can’t oversee the handling process at your arrival destination or ensure that your instructions are followed.

I developed a free digital tool on Atyzi.com to help bridge these communication barriers. This digital platform allows you to build and store pertinent information for your mobility device and securely share it with a QR Code. You can also print off this QR Code and fixate it to the backrest of your wheelchair labeled “Scan Me”. This information will provide Ramp Agents with immediate access to all the information you have recorded and specified.

Connection Times (Buffer)
Choosing the least expensive flight is not always in your best interest, particularly if you use a wheelchair to travel. A layover shorter than ninety minutes introduces a high risk of missing your connecting flight. The boarding and deplaning processes are more intricate for travelers using wheelchairs, requiring extra time for transferring onto the plane and waiting for personal wheelchairs to be securely stowed. Additional time might also be needed for any unforeseen delays on each leg of your itinerary. Given these considerations, opting for a longer layover minimizes the risk of missing connections and being stranded.

Transportation Security Administration
You can reach out to TSA Cares 72 hours prior to your flight to arrange a more tailored screening process. TSA Officers are also prepared to offer physical assistance such as lifting or holding your device as needed. You may also request additional a private screening area during the pat-down process. Keep in mind, your mobility device will undergo its own inspection and may require the removal the the seat cushion or pads.

Service Animals will undergo a visual inspection and may be subject to a pat-down during the screening process. You may also be asked to remove its harness and leash and guide it through the metal detector.

You may also want to apply for TSA PreCheck, which is a Trusted Traveler Program that can limit the extent of the screening process.

Reporting Damage
It’s crucial to report any wheelchair damage before leaving the airport; otherwise, the airline might evade liability. While airlines often collaborate with reputable firms like Scootaround to handle such incidents, the initial inspection falls on you. Skip mentioning any concerns to flight attendants or ramp agents, as this isn’t their purview. If you discover damage, your first stop should be the Baggage Claims office to initiate the reporting process. In the event your wheelchair becomes inoperable upon landing, first check for simple disconnections—like joystick cables or battery connectors. If neither of these have been tampered with, you can also check the fuse switch before requesting an escort to the Baggage Claims office to inquire about the availability of emergency technical services.

Final Thoughts
If you rely on a mobility device, verify that the aircraft type can accommodate its dimensions. Timing is crucial—opt for layovers longer than 90 minutes to reduce the risk of missed connections or damage to your device. For effective communication, engage with the Ramp Supervisor and consider using digital aids like Atyzi.com for streamlined information sharing.

If your mobility device is returned damaged, report it immediately at the Baggage Claims office. Careful planning and effective communication can significantly reduce the risks, build self-confidence, and enhance your overall experience.