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
We are thrilled to welcome Ted Trahan as the President of the OIF Board of Directors!
Karen Braitmayer is the founder and managing principal of Studio Pacifica, an architectural consulting firm located in Seattle, Washington. The firm is committed to creating beautifully designed, barrier-free civic, commercial, education, hospitality, medical and multi-family residential projects since 1993. In addition to her role as managing principal, she has recently served on the US Access Board, an independent Federal agency that provides leadership in accessible design public policy. According to her company’s bio, “early in her career, it occurred to Karen that as an architect and a wheelchair user, it was possible for her to make a unique contribution to the field. Her professional focus on accessibility and her advocacy efforts for inclusion certainly did just that.” As a member of the OI community and a person with OI, Karen is a regular and popular speaker at the OIF National Conference and is extremely helpful to community members who are undertaking renovations to make their homes more accessible. She has been a participant at various international OI meetings. In her private life she is an avid knitter, sailor, and traveler, and enjoys spending time with her husband and daughter.
Dr. Michelle Fynan is a Licensed Mental Health Counselor with a PhD in Clinical Sexology. She is a Board Certified Clinical Sexologist, Sex Therapist, and Relationship/Intimacy Coach. She has specialized training from Harvard Medical School in Treating Couples, and she holds a Masters of Science in Counseling with a dual specialization in Mental Health Counseling and Marriage, Couples, & Family Therapy. She offers virtual coaching for singles, couples, and groups on the topics of dating, relationships, sex, and intimacy, with a specialization in chronic illness and disability. Michelle has Type 1 OI and grew up as an active member of the OI community, regularly attending conferences and support group meetings with her parents. Now as a mental health professional, she has presented at a number of national and regional conferences for the OI Foundation as well as scientific and town hall meetings. She is currently serving on OIF’s PCORI Patient Advisory Board and was on the PCORI Education Committee for improving patient centered outcomes at the start of the COVID19 pandemic. She was also a Masters Thesis Committee Chair for a Baylor College of Medicine Genetic Counseling Program student who successfully defended their thesis on parental experiences and satisfaction with genetic counseling for a prenatal diagnosis of OI. Michelle lives in FL with her husband and her two daughters (who also have OI), and she looks forward to continuing to support the mission of the OIF together with her family.
Jamie Sharples lives in Downingtown, Pennsylvania with his 13-year old daughter. He was born with Type III OI and is the only member of his family with OI. Jamie manages the private equity firm he founded in 2012 which focuses on investments in commercial real estate in the Southeast U.S. He frequently spends time in North Carolina and South Carolina for work.
Dr. Reid Sutton is Professor of Molecular & Human Genetics at Baylor College of Medicine in Houston, Texas. He is attending physician in the Skeletal Dysplasia Clinic at Texas Children’s Hospital where he provides care to children and adults with OI and other skeletal disorders. He is a member of the OIF medical advisory council and was a Principal Investigator for the OIF Linked Clinical Research Centers, a five-year longitudinal study of OI sponsored by the OIF. He is currently the co-Principal Investigator for the Longitudinal Study of the Brittle Bone Diseases Consortium of the Rare Disease Clinical Research Network (BBDC-RDCRN) and the Clinical Team Liaison for the BBDC-RDCRN. The BBDC is an NIH-sponsored, collaborative initiative with 13 participating sites across North America that aims to advance research and clinical care for individuals with OI.
Michael B. Bober, MD, PhD is a pediatrician and geneticist who directs the Skeletal Dysplasia Program at the Alfred I. duPont Hospital for Children in Wilmington, DE. He is a Professor of Pediatrics at Thomas Jefferson University’s Stanley Kimmel Medical College. Dr. Bober completed a combined M.D./Ph.D. program in Biomedical Engineering at Tulane University. His dissertation research focused on the genetic response of bone to mechanical and hormonal stimulation. He then went on to complete a Pediatrics Residency at Tulane University and a Medical Genetics Residency and Fellowship at Johns Hopkins University. He is a board certified in Pediatrics, Clinical Genetics and Molecular Genetics. Clinically, his practice is exclusively focused on the diagnosis and management of children with skeletal dysplasia. 
Jeanne M. Franzone, MD is a pediatric orthopaedic surgeon at the Nemours Alfred. I. duPont Hospital for Children in Wilmington, DE. She is the Co-Director of the Multidisciplinary Osteogenesis Imperfecta Program. At Nemours, the multidisciplinary OI team provides comprehensive OI care from the prenatal period through the age of 35 years. Dr. Franzone completed orthopaedic surgery residency at Columbia University Medical Center. She then completed a pediatric orthopaedic surgery fellowship at the Nemours Alfred I. duPont Hospital for children and an additional fellowship in limb deformity, lengthening and reconstruction at the International Center for Limb Lengthening in Baltimore, MD. Dr. Franzone is a member of the Limb Lengthening and Reconstruction Society and serves on the Faculty for the OIF OI TeleECHO series. Dr. Franzone is the incoming Co-Chair of the International Conference on Children’s Bone Health (ICCBH) Young Investigator Networking group. Dr. Franzone is on the Scientific Advisory Board for the OIF’s Preparing Adults with Osteogenesis Imperfecta to Engage in Research on Access and Quality of Care for Their Rare Disease PCORI project. 
Eric T Rush, MD is a Clinical Geneticist at Children’s Mercy Hospital and the University of Kansas Medical Center (KUMC). He is an Associate Professor of Pediatrics at the University of Missouri-Kansas City. He is Board Certified in Pediatrics, Internal Medicine and Clinical Genetics. He was previously the medical director of the osteogenesis imperfecta and metabolic bone clinics at Children’s Hospital and Medical Center in Omaha, Nebraska and currently is the co-director of the Children’s Mercy Skeletal Dysplasia clinic. Dr. Rush received Bachelor of Science degrees in Biochemistry and Biology with Concentration in Genetics at the University of Kansas in 2001. He received his medical degree at University of Kansas School of Medicine, Kansas City, KS in 2005. He completed a residency in Internal Medicine and Pediatrics at the University of Nebraska Medical Center in 2009 and Chief Residency in Pediatrics at the University of Nebraska Medical Center in 2010. He finished his training with a Clinical Genetics fellowship at the University of Nebraska Medical Center in 2012. Among his clinical interests are osteogenesis Imperfecta, hypophosphatasia, X-linked hypophosphatemia (XLH), cancer genetics, cardiovascular genetics, dysmorphology, Personalized Medicine, and Genetics of Common Disease. His research interests include extraskeletal manifestations of osteogenesis Imperfecta, best practices in treatment of hypophosphatasia, skeletal pathology in peroxisomal biogenesis disorders, and molecular characterization of rare syndromes. Dr. Rush’s professional affiliations include American College of Medical Genetics, American Academy of Pediatrics, the American Society for Bone and Mineral Research, the International Society for Clinical Densitometry, and Alpha Omega Alpha. He is on the Scientific Advisory Board for the Rare Bone Diseases Alliance and the Global Foundation for Peroxisomal Disease and is on the Board of Directors for RareKC. 
Maegen Wallace, MD is an Associate Professor of Orthopaedic Surgery at the University of Nebraska Medical Center and practices pediatric orthopaedic surgery at Children’s Hospital and Medical Center in Omaha, Nebraska. A native of Nebraska, she graduated from Missouri State University with a BS in Sports Medicine and Athletic Training and the University of Nebraska Medical Center with her medical degree. She completed her orthopaedic surgery residency at Saint Louis University and her pediatric orthopaedic surgery fellowship at AI duPont Hospital for Children in Wilmington, Delaware. She is the director of the Osteogenesis Imperfecta clinic at Children’s hospital in Omaha and serves as a board member for the Jansen’s Foundation. She has committed a significant portion of her clinical practice to OI and the majority of her academic practice to OI. 
