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

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

Welcome to the OIF Board of Directors!

The OIF Board Development Committee searches for nominees with a personal connection to osteogenesis imperfecta and experience in one or more of the following areas: accounting, finance, fundraising, organizational management, public relations, strategic planning, business or law.

On July 1, 2022, we will welcome Karen L Braitmayer, Dr. Michelle Fynan, James (Jamie) Sharples, and Dr. V. Reid Sutton to 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.

Jamie previously served on the OIF Board of Directors (2003 – 2009) and has acted as the Chair of the Finance Committee for the past decade. His interest in the Foundation is deep and he said, “I’ve found my work with the Finance Committee very rewarding over the past many years, but I am eager to take a more active role in helping the Foundation develop the best course forward to meet the rapidly evolving challenges it and its constituents face.”


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.


Meet the New OIF Medical Advisory Council Members!

Since the 1970’s, the OI Foundation’s Medical Advisory Council (MAC) has been comprised of outstanding men and women who have experience in research and the many clinical care specialties related to OI. Over the years, MAC members have made discoveries that advanced our understanding of OI and improved clinical care. MAC members volunteer their 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. They answer questions from the OI community and from the medical community.

On July 1, 2022, we will welcome four new members to the OI Foundation MAC: Michael B. Bober, MD, PhD; Jeanne M. Franzone, MD; Eric T Rush, MD; and Maegen Wallace, MD.

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. Click here to view Dr. Bober’s publications.


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. Click here to view Dr. Franzone’s list of publications.


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. Click here to view Dr. Rush’s list of publications.


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. Click here to view Dr. Wallace’s publications.