OI Foundation Medical Advisory Council
Even before it was officially incorporated, the OI Foundation has benefited from the volunteer service of a team of medical advisors. Since the 1970’s, the 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 the genetics of OI and improved clinical care. Each MAC member must not only have extensive experience in OI, but also be a leader in his/her special area of medical practice. All current MAC members have published in peer-reviewed medical journals.
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. They also attend meetings in their specialty areas as representatives of the OI Foundation. MAC members speak at OI Foundation national and regional conferences, participate in the OI Foundation’s annual scientific meeting and every 3 years in the International OI Scientific Meeting.
CHAIR: Cathleen Raggio, MD
- Hospital for Special Surgery, New York, NY, Orthopedic Surgeon
- Co-Director of the Kathryn O. and Alan C. Greenberg Center for Skeletal Dysplasias
- Principal Investigator, Brittle Bone Disorders Consortium site in New York, NY
Michael Bober, MD, PhD
- Vice President, Clinical Development and Medical Affairs at Tyra Biosciences
- Pediatrician and Medical Geneticist and at Nemours Children’s Hospital, Delaware (Part-time, volunteer)
Peter Byers, MD
- Professor of Laboratory Medicine and Pathology, and Professor of Medicine (Medical Genetics), University of Washington, Seattle, WA
- Clinical Geneticist, with specialty in heritable connective tissue disorders that include OI, Marfan syndrome, Ehlers Danlos syndrome. Founder and Director of the Collagen Diagnostic Laboratory, University of Washington
- Member of the MAC since 2004 and former MAC chair
- Recipient of the Marfan Award from the Marfan Foundation, and the inaugural Dr. John DiMasi Award from the VEDS Movement for excellence in care and research in vascular EDS.
- March of Dimes/Colonel Harland Sanders Award for lifetime achievement in the field of genetic sciences; Victor A McKusick Leadership Award from the American Society of Human Genetics
Hollis Chaney, MD
- The George Washington University School of Medicine and Health Sciences, Washington, DC
- Children’s National Health System, Washington, DC, as Vice Chair of the Division of Pulmonary Medicine
Paul Esposito, MD
- Professor Emeritus of Orthopedic Surgery and Pediatrics, University Nebraska Medical Center, Omaha, NE
- Pediatric Orthopedic Surgeon Children’s Hospital and Medical Center, Omaha, NE
- Member of the OI Clinic at Children’s Hospital and Medical Center in Omaha
Jeanne Franzone, MD
- Nemours Alfred I. duPont Hospital for Children in Wilmington, DE.
- Pediatric orthopaedic surgeon at the Nemours Alfred. I. duPont Hospital for Children.
- Co-Director of the Multidisciplinary Osteogenesis Imperfecta Program.
- 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.
Francis Glorieux, OC, MD, PhD
- Canadian Shriners Hospitals for Children, Shriners Hospitals for Children, Montreal, Quebec, and McGill University in Montreal
- Principal Investigator, Brittle Bone Disorders Consortium site in Montreal, Qc, Canada
- Principal Investigator on the landmark 1998 study on using bisphosphonates to treat children with OI; author of the OI Foundation booklet, Guide to OI for Pediatricians and Primary Care Physicians, and senior editor of Pediatric Bone: Biology & Diseases
Deborah Krakow, MD
- Professor and Chair, Obstetrics and Gynecology, UCLA, David Geffen School of Medicine, Los Angeles, CA
- American Board of Medical Genetics board member
- American College of Obstetrics and Gynecology policy committee on Genetics.
- Principal Investigator, Brittle Bone Disorders Consortium site in Los Angeles, CA
Richard W. Kruse, DO, MBA
- Professor of Orthopaedic Surgery Thomas Jefferson University College of Medicine in Philadelphia, PA and the Uniformed Services University School of Medicine in Bethesda, MD.
- Vice Chair Department of Orthopedics and Chief of the Orthopedic Trauma Service at Nemours/Alfred I. duPont Hospital for Children in Wilmington, DE.
- Co-Director for the multidisciplinary OI program at Nemours/Alfred I. duPont Hospital for Children in Wilmington, DE.
- Interests: Osteogenesis Imperfecta, bone trauma, sports rehabilitation, nutrition and transition from pediatric to adult health care.
Brendan Lee, MD, PhD
- Baylor College of Medicine, Houston, TX
- Principal Investigator, Brittle Bone Disorders Consortium
- Dr. Lee is an elected member of the National Academy of Medicine.
Joan Marini, MD, PhD
- Scientist Emeritus, National Institute of Child Health and Development, National Institutes of Health, Maryland
- Chief, Bone and Extracellular Matrix Branch, NICHD, National Institutes of Health, Bethesda, MD
- Geneticist, pediatrician, scientist specializing in Molecular Genetics
- Led clinical studies focused on growth in OI, pulmonary function in OI, treatment of children with pamidronate and rGH
- Her laboratory identified many of the genes causing rare forms of OI and generated mouse models to study their mechanism.
- Awarded the National Institutes of Health Director’s Award three times for her research on rare bone disorders.
- Elected member of Association of American Physicians
Sandesh C.S. Nagamani, MD
- Professor in the Departments of Molecular and Human Genetics and Internal Medicine at Baylor College of Medicine
- Vice Chair, Clinical Research Affairs, Department of Molecular and Human Genetics, Baylor College of Medicine
- Co-Director, Intellectual and Developmental Disabilities Research Center, Baylor College of Medicine
- Focused on translational research that involves evaluating new and potential therapies for various genetic disorders
- Clinical geneticist – provides clinical care for adult patients with a wide variety of heritable conditions including OI, heritable disorders of bone, and other metabolic bone diseases
- Investigator, Brittle Bone Disorders Consortium (BBDC)
Frank Rauch, MD
- Canadian Shriner’s Hospitals for Children, and McGill University Faculty of Medicine, Montreal, Quebec, Canada
- Director, Biomedical Laboratory, Shriners Hospitals for Children, Montreal, Quebec.
- Principal Investigator, Brittle Bone Disorders Consortium site in Montreal QC, Canada.
Eric Rush, MD
- Children’s Mercy Hospital and the University of Kansas Medical Center (KUMC), Kansas City, MO.
- Clinical Geneticist at Children’s Mercy Hospital and the University of Kansas Medical Center.
- Professor of Pediatrics at the University of Missouri-Kansas City.
Sandy Sandhaus, MD, PhD, FCCP
- University of Colorado School of Medicine, and National Jewish Health, Denver, CO.
- Clinical Director at the Alpha-1 Foundation, Denver. CO.
- Medical Director and Executive Vice President of AlphaNet.
- Medical Director of AlphaNet Canada.
- Dr. Sandhaus applies his experience with internal medicine, pulmonary disease, critical care medicine and the biopharmaceutical industry to the study of lung disease.
Jay Shapiro, MD
- Dr. Shapiro is Consultant to the Endocrine and Diabetes Dept. at the Walter Reed National Military Medical Center, Bethesda, MD
- Endocrinologist experienced in the treatment of genetic and metabolic bone disorders in children and adults
- Until recently, Director of the Bone and Osteogenesis Imperfecta Department, Kennedy Krieger Institute, Baltimore, MD. Professor in Dept. Physical Medicine and Rehabilitation Johns Hopkins School of Medicine
- Currently practicing in Bethesda, MD, Dr. Shapiro is Adjunct Professor, Dept. of Medicine, Uniformed Services University of Health Sciences. Bethesda, MD
- Dr. Shapiro is the Editor-in-Chief of the 2014 textbook, Osteogenesis Imperfecta: A Translational Approach to Brittle Bone Disease (Elsevier Publishers)
Peter Smith, MD
- Pediatric Orthopaedic Surgeon at Shriners Hospital for Children, Chicago.
- Professor, Orthopaedic Surgery, Rush University Medical Center.
- Director, Osteogenesis Imperfecta Clinic, Shriners Hospital for Children, Chicago.
- Principal Investigator, Brittle Bone Disorders Consortium site in Chicago.
- Dr. Smith has visited China, India and several countries in South American to train physicians in surgical techniques related to OI.
- Co-Editor of the 2015 textbook, Transitional Care in Osteogenesis Imperfecta: Advances in Biology, Technology, and Clinical Practice(Shriners Hospitals for Children- Chicago, Publishers)
Reid Sutton, MD
- Texas Children’s Hospital Skeletal Dysplasia Clinic and Baylor College of Medicine Department of Molecular and Human Genetics, Houston, TX
- Clinical Team Liaison and Principal Investigator, Brittle Bone Disorders Consortium Rare Disease Clinical Research Center, Baylor College of Medicine and Texas Children’s Hospital, Houston, TX
Laura Tosi, MD
- Orthopedic Surgeon, Division of Orthopaedics & Sports Medicine, Children’s National Hospital
- Associate Professor of Orthopaedics and Pediatrics, George Washington University School of Medicine and Health Sciences, Washington, DC.
- Principal Investigator, Children’s Research Institute (CRI), Center for Genetic Medicine Research (CGMR), Children’s National Hospital, Washington, DC.
- Board of Directors, Osteogenesis Imperfecta Foundation
- Chair, Steering Committee, Rare Bone Disease Alliance
- Faculty Chair, Rare Bone Disease TeleECHO
- Principal Investigator, Brittle Bone Disorders Consortium site in Washington, DC.
- Board of Directors, US Bone & Joint Initiative
- Steering Committee, Own the Bone Program, American Orthopaedic Association
- Medical and Scientific Advisory Committee, American Bone Health
David Vernick, MD
- Harvard Medical School, Boston, MA
- Surgeon in Otolaryngology at Massachusetts Eye and Ear Infirmary, Beth Israel Deaconess Medical Center, Brigham and Women’s Hospital, and Children’s Hospital, Boston, MA
Maegen Wallace, MD
- University of Nebraska Children’s Hospital and Medical Center, Omaha, NE.
- Associate Professor of Orthopaedic Surgery at the University of Nebraska Medical Center.
- Wallace 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.
Matthew Warman, MD
- Director of Orthopedic Research Laboratories, Department of Orthopaedic Surgery, Boston Children’s Hospital, Boston, MA
- Professor, Departments of Orthopaedic Surgery and Genetics, Harvard Medical School, Boston, MA
Michael Whyte, MD
- Emeritus Professor of Medicine, Washington University in Saint Louis
- Scientific Staff, Shriners Hospitals for Children, Saint Louis.