Medical Advisory Council
The Medical Advisory Council assists the board by reviewing FD Foundation publications and helping establish research goals. This diverse advisory body includes doctors and researchers who are the experts from around the world for these rare diseases.
Alison Boyce, MD (Chair) is a pediatric endocrinologist and physician scientist in the Section on Skeletal Disorders and Mineral Homeostasis, National Institute of Dental and Craniofacial Research, National Institutes of Health (NIH). After completing undergraduate studies at the University of Virginia, she received medical and general pediatrics training at Eastern Virginia Medical School, followed by an endocrinology fellowship at the NIH. She holds a faculty appointment at Children’s National Health System, and is active in the joint NIH and Children’s National Health System’s Pediatric Fellowship training program, as well as the Children’s National Bone Health Program. Dr. Boyce’s research focuses on rare disorders of bone and mineral metabolism, including fibrous dysplasia/McCune-Albright syndrome, disorders of fibroblast growth factor-23, and hypoparathyroidism. As chair of the Medical Advisory Council, Dr. Boyce participates in board meetings in a nonvoting capacity.
Michael T. Collins, MD is an endocrinologist whose area of specialty is metabolic bone diseases and mineral metabolism. He is the Chief of the Skeletal Clinical Studies Unit of Craniofacial and Skeletal Diseases Branch at the NIH in Bethesda, MD. The primary focus of his research is polyostotic Fibrous Dysplasia (PFD) and the McCune-Albright syndrome (MAS). He is the principal investigator on several clinical studies of patients with PFD/MAS, and is a globally recognized expert on FD/MAS. Dr. Collins served as Chair of the Medical Advisory Council from 2004-2018, and continues to play an important role in advising the Fibrous Dysplasia Foundation.
Daniel Handel, MD holds board certifications in Family Practice and Hospice and Palliative Medicine. Dr. Handel is the founding Chief of Palliative Medicine at Denver Health, providing both inpatient and outpatient services through an interdisciplinary team serving patients with advanced illness since 2013, and previously held a senior clinical staff appointment at the National Institutes of Health for twelve years where he founded and led the NIH Palliative and Hospice Medicine fellowship. With special interests in pharmacological and mind/body pain strategies, Dr. Handel has presented internationally and has authored books and other thirty book chapters and journal articles on pain management, palliative care medicine, complementary medicine, hypnosis, and mind/body medicine. Dr. Handel lives in Denver, Colorado.
Ed Hsiao, MD, PHD received his doctorate from Johns Hopkins, did his internal medicine residency at Johns Hopkins Hospital, and went to the University of California at San Francisco for his endocrine fellowship. Ed’s research is driven by a bedside-to-bench-to-bedside approach, using clinical observations and patient samples to inspire research with the long term goal of improving the care of patients with all types of skeletal disorders. His laboratory uses a combination of human stem cell and mouse models to study how genetics and hormone signaling contributes to the normal formation of key skeletal tissues such as bone, cartilage, muscle, and fat. The lab also uses human induced pluripotent stem cells and genomics to understand what happens to the genetic and hormone signals that results in diseases affecting the musculoskeletal system. He sees patients with metabolic and rare bone diseases, including fibrous dysplasia and McCune Albright syndrome, in the Metabolic Bone Clinic at the University of California, San Francisco.
Janice Lee, MD is an oral and maxillofacial surgeon who treats children and adults. Her areas of expertise include facial reconstruction, maxillofacial pathology and craniofacial anomalies. Previously a member of the Craniofacial Anomalies team at UCSF Medical Center in San Francisco, CA, she currently practices at the National Institutes of Health in Bethesda, MD. Her research is in the area of bone marrow stem cells and the effects of age on their ability to differentiate and form bone. During her previous training at the National Institutes of Health, she was the maxillofacial specialist for a team evaluating and treating one of the largest populations of patients with McCune-Albright syndrome and polyostotic fibrous dysplasia.
Lynn M. Lindaman MD, specializes in pediatric orthopaedics, sports medicine & general orthopaedics in Des Moines, Iowa. He is also an individual with fibrous dysplasia.
Frederick Singer, MD lives in southern California. He is Director of the Endocrine/Bone Disease Program at the John Wayne Cancer Institute in Santa Monica, CA and is clinical professor of medicine at the Geffen School of Medicine at UCLA. He is a past chairman of the Board of Directors of The Paget Foundation and a past president of the American Society for Bone and Mineral Research. He has a long term interest in disorders of the skeleton.
Scientific Advisory Council
The Fibrous Dysplasia Foundation Scientific Advisory Council (SAC) is made up of medical clinicians and researchers with knowledge of skeletal disease and good scientific practice in the investigation of complex multi-system / endocrine related rare disease. Members will assist the Board of Directors in
- Setting the parameters for a patient registry/bio-repository and establishing best ethical practices in the handling of patient data.
- Advising the foundation on future directions for research and participate in the creation of requests for proposals.
- Evaluating proposals submitted to the FD Foundation for research grants
Should a SAC member become involved in FD, MAS or Cherubism research and wish to apply for FD Foundation research funds or develop any other conflict of interest with the SAC mission to evaluate proposals, it is expected that she or he will resign.
Rare Disease Therapeutic Development
Andrew Shenker, MD, PhD (Chair)
Independent Consultant in Rare Diseases and Gene Therapy
Bone and Mineral Metabolism, Genetics
Michael Whyte, MD
Professor of Medicine, Pediatrics, and Genetics
Washington School of Medicine
Medical-Scientific Director, Center for Metabolic Bone Disease and Molecular Research,
Shriner’s Hospitals for Children,
St. Louis, MO
Craniofacial
Leonard Kaban, DMD, MD
Walter C. Guralnick Distinguished Professor
Department of Oral and Maxillofacial Surgery
Massachusetts General Hospital
Harvard School of Dental Medicine
Endocrinology
Henry Kronenberg, MD, PhD
Chief, Endocrine Unit
Massachusetts General Hospital
Professor of Medicine
Harvard Medical School
Adult Endocrinology
Dolores Shoback, MD
Professor in Residence
University of California at San Francisco School of Medicine
Department of Medicine
Division of Endocrinology
Pediatric Orthopedics
Horacio Plotkin, MD
Head of Clinical Development, Rare Diseases
Moderna Therapeutics
Bone and Mineral Metabolism
Harald Werner Jueppner
Massachusetts General Hospital
Pediatrics
Endocrine Unit, Thier 10
55 Fruit St
Boston, MA 02114
Pediatric Endocrinology
Thomas Carpenter
Yale Pediatric Endocrinology
Doctors Building
2 Church Street South
New Haven, CT 06519
Tissue Engineering
Frank Barry, PhD
Director, National Centre for Biomedical Engineering Science Professor of Cellular Therapy
Regenerative Medicine Institute
National University of Ireland
Galway, Ireland
Rare disease registry
Cornelius Boerkoel, MD, PhD
Undiagnosed Diseases Program, NHGRI, NIH
9 Memorial Drive, Building 9 Room 1E100
Bethesda, MD 20892
Rare disease biorepository
Dr Susanne Ragg MD PhD
Director, Center for Computational Diagnostics
702 Barnhill Dr. ROC 4340
Indianapolis, IN 46202
FD/MAS Patient Registry Steering Committee
The FD/MAS Patient Registry Steering Committee assists the Foundation by reviewing data use applications from researchers and helping establish guidelines for the FD/MAS Patient Registry. The steering committee includes doctors, researchers, and patients.
Kiran Murty (Chair) lives in New Jersey. He is a parent of a son with fibrous dysplasia. He offers technology consulting services for his clients. In prior roles, he worked as CTO, IT Director and has led engineering teams for global companies in healthcare and financial services verticals. He has a masters degree for Columbia University, majoring in technology and management.
Alison Boyce, MD is a pediatric endocrinologist and Associate Research Physician in the Skeletal Diseases and Mineral Homeostasis Section, National Institute of Dental and Craniofacial Research, National Institutes of Health in Bethesda MD, USA. Dr Boyce’s work focuses on bone and mineral metabolism, using rare and pediatric skeletal disorders as models through which to understand human biology and physiology. She leads investigations in fibrous dysplasia/McCune-Albright syndrome and has characterized many aspects of this disorder and its treatment. Additional studies focus on disorders offibroblast growth factor-23 and primary connective tissue disorders. Dr Boyce is a faculty member in the joint NIH and Children’s National Pediatric Endocrinology fellowship training program. She holds an adjunct position at Children’s National Health System in Washington, D.C., where she attends in the multidisciplinary Bone Health Program in partnership with the Division of Orthopaedics. She is a member of the Fibrous Dysplasia/McCune-Albright Syndrome International Consortium and serves as Chair of the Medical Advisory Committee to the Fibrous Dysplasia Foundation.
Amanda Konradi, Ph.D. (UC-Santa Cruz) is an Associate Professor of Sociology, Chair of the IRB, and Director of the Gender and Sexuality Studies minor at Loyola University Maryland. She teaches social research methods, micro sociology, and criminal justice courses. She served on the Fibrous Dysplasia Foundation Board of Directors from 2004 to 2016 as Secretary and Acting President. Her research focuses on how patients negotiate the social aspects of craniofacial conditions, in particular the role of stigma. Cherubism, a hereditary condition affecting the bones of the face, runs within her family.
Cindi Brandt Levin J.D. lives in Randolph, New Jersey and is the parent of a 24 year-old daughter who has FD in her hip and femur. Inspired by her amazing daughter, Cindi is passionate about finding better treatments and a cure for FD. She chaired the 2014 NYC Patient and Family Medical Conference, and started the FD Team for the UPenn Million Dollar Bike Ride which raised over $570,000 for FD research in four years. Cindi has an employment law practice in Morristown, NJ and is a graduate of Northwestern University and NYU Law School. As a member of the SC, Cindi is focused on assisting the continued development of a robust registry of data and information, to help patients and caregivers better manage the disease and make informed decisions, as well as stimulate researchers to perform more studies in the quest for a cure and better treatments.
Andrea Burke, DMD, MD, is an Assistant Professor in the Department of Oral and Maxillofacial Surgery. Dr. Burke joined the Oral and Maxillofacial Surgery team at the University of Washington after completing the Dental Clinical Research Fellowship Program at the National Institute of Dental and Craniofacial Research, National Institutes of Health, in Bethesda, MD. She trained in Oral and Maxillofacial Surgery at the Massachusetts General Hospital in Boston, MA, and obtained her D.M.D. and M.D. degrees from Harvard University. Dr. Burke is a Diplomate of the American Board of Oral and Maxillofacial Surgery. She practices the full scope of Oral and Maxillofacial Surgery, with a special interest in skeletal diseases.
