Scientific Advisory Board
The IGNITE project has the privilege of working with an illustrious Scientific Advisory Board (SAB), which provides strategic, scientific input and direction. The SAB is made up of experts in orphan disease and orphan disease drug development from industry, government and policy, and research environments.
The SAB is comprised of the following:
Dr. Rod McInnes, Director of the Lady Davis Research Institute and Alva Chair in Human Genetics at McGill University
Dr. Daryl Pullman, Professor of Medical Ethics in the Faculty of Medicine at Memorial University
Dr. Alan Beggs, Director of the Manton Centre for Orphan Disease Research at Harvard University
Dr. Marlene Haffner, former Director of the Office of Orphan Products Development of the Food and Drug Administration
Mr. Dan Darnley, Chief Intellectual Property Counsel for Millennium Pharmaceuticals, Inc.
Dr. Robert Bell, former VP Research of GlaxoSmithKline
Roderick R. McInnes is the Director of the Lady Davis Institute of the Jewish General Hospital, Canada Research Chair in Neurogenetics, and Professor of Genetics and of Biochemistry at McGill University, where he has succeeded Charles Scriver as the Alva Chair in Human Genetics. Until recently, he was a University Professor of the University of Toronto and Senior Scientist at the Hospital for Sick Children.
Dr. McInnes received his undergraduate and medical degrees from Dalhousie University, and his Ph.D. from McGill. Previously he was the Head of the Program in Developmental Biology at the Research Institute of the Hospital for Sick Children, an International Research Scholar of the Howard Hughes Medical Institute and, from 2000-2010, the inaugural Scientific Director of the Institute of Genetics of CIHR.
He has made important contributions to the understanding of the molecular basis of retinal and eye development, and to the identification of genes and processes associated with inherited retinal degenerations. Recently, he and collaborators identified an important protein, Neto1, required for learning and memory, and established that it is possible to correct an inherited learning defect in mice with a drug, a finding with important implications for human learning disability.
He is a coauthor of the 5th, 6th and 7th editions of Thompson and Thompson’s Genetics in Medicine, and of the CIHR Guidebook for New Principal Investigators. Amongst other honours, Dr. McInnes is a Fellow of the Royal Society of Canada and the Canadian Academy of Health Sciences, and was the recipient of an honourary Doctor of Laws from Dalhousie University in 2007. He was appointed to the Order of Ontario in 2008, and a member of the Order of Canada in 2009. In 2010, Dr. McInnes was the President of the American Society of Human Genetics.
Dr. Daryl Pullman, Professor of Medical Ethics in the Faculty of Medicine at Memorial University
Daryl is a member of the Canadian Institutes of Health Research (CIHR) Stem Cell Oversight Committee, is co-Chair of the CIHR Ethics Advisory Committee for the Canadian Longitudinal Study on Aging, and is a member of the CIHR Scientific Expert Working Group – Neurovascular issues and MS.
He has served previously as a member of the CIHR Standing Committee on Ethics, was on the advisory board for the CIHR Institute of Genetics, and was the GE3LS lead for the Atlantic Medical Genetics and Genomics Initiative (AMGGI), a large Genome Canada funded project in Atlantic Canada.
He has published widely on issues in research ethics including genetics and privacy, genetic discrimination, and on the issue of benefit sharing in commercial genetics projects.
Alan Beggs is director of The Manton Center for Orphan Disease Research at Children’s Hospital Boston and the Sir Edwin and Lady Manton Professor of Pediatrics at Harvard Medical School. He received his AB in biology at Cornell University and his PhD in human genetics at Johns Hopkins University. He completed postdoctoral fellowships in medical genetics at Johns Hopkins University and in clinical molecular genetics at Harvard Medical School. He has directed a research laboratory in the Genetics Division at Children's Hospital since 1992.
As Director of the Manton Center for Orphan Disease Research at Children’s Hospital, Dr Beggs runs a collaborative and interdisciplinary research program focused on basic and translational studies of rare diseases. Research aims to understand the structures and function of proteins that make up skeletal muscle fibers, and to use this information to develop methods to diagnose and treat neuromuscular diseases in children.
Specifically, the group is focused on the genetic causes of the congenital myopathies, a group of related disorders of muscle weakness caused by defective genes and proteins in skeletal muscle. Over the past few years, the laboratory has identified gene mutations affecting a series of muscle contractile proteins shown to cause nemaline myopathy, a disease characterized by muscle weakness, respiratory problems and the presence of "nemaline rods" (abnormal rod-shaped structures) in muscle fibers.
Current projects include the identification of new nemaline myopathy genes, understanding the basis of the variability of patients' symptoms and the determination of how these mutations affect muscle function and lead to weakness.
Recent studies have utilized gene expression studies (microarrays), cell culture experiments, and mouse, zebrafish and canine models to characterize the defective components of muscle fibers in children with multiminicore, myotubular and centronuclear myopathies. Based on these studies, the laboratory is now working to develop therapies that target the underlying defects responsible for muscle weakness.
MARLENE E. HAFFNER, MD, MPH is the CEO of Haffner Associates, LLC a firm dedicated to the strategy, development and policy of drug development with a special emphasis on rare diseases and the products that treatment them. Prior to establishing her own company, in March 2009, she served as Executive Director, Global Regulatory Policy and Intelligence at Amgen, Inc.
For 20 years, Dr. Haffner served as Director of the Office of Orphan Products Development (OOPD) of the Food and Drug Administration (FDA). As OOPD Director she was responsible for the leadership and management of the FDA orphan products development program, the first Orphan Products program in the world. She is well known as an expert in orphan drug development and is a sought after speaker and consultant in that area of regulatory science.
In addition to her consulting activities Marlene is Adjunct Professor, Department of Preventive Medicine and Biometrics, and Clinical Professor, Department of Medicine, at the F. Edward Hébert School of Medicine, Uniformed Services University of the Health Sciences (USUHS) in Bethesda, Maryland. For 36 years she served in the United States Public Health Service beginning her career with the Indian Health Service in Gallup, New Mexico.
She received her MD from the George Washington University School of Medicine where she then interned in Internal Medicine. She received further training in internal medicine, dermatology and hematology at the Presbyterian Hospital, New York and that the Albert Einstein College of Medicine, New York. She received an MPH from the Johns Hopkins University Bloomberg School of Public Health. During her Public Health career, she rose to the rank of Rear Admiral in the USPHS.
Dr. Haffner has received many awards for her work in drug development including The Outstanding Contributions to Pharmaceutical Medicine Award from the American Academy of Pharmaceutical Physicians, and in May 2009, the Woodrow Wilson Award for Outstanding Government Service from the Johns Hopkins University.
Mr. Darnley has over 20 years of intellectual property law and licensing experience. As Vice President, Chief Intellectual Property Counsel for Millennium Pharmaceuticals, Inc., he establishes and directs Takeda’s worldwide intellectual property strategy for the Oncology therapeutic area. Mr. Darnley also heads Takeda’s IP Group which addresses the IP issues associated with the production of protein therapeutics such as antibodies.
Previously, Mr. Darnley spent four years with BiogenIDEC where he served as Associate General Counsel, Leader of the Neurology IP Group and was lead IP attorney for due diligence evaluations conducted for BiogenIDEC’s Business Development group. Prior to that position, Mr. Darnley spent ten years with Pharmacia Inc. (and its predecessor companies) ultimately fulfilling the role of Senior Director, Associate General Counsel and Site Director of Patent Operations at the Company’s Kalamazoo, Michigan research campus.
Before corporate practice, Mr. Darnley worked in private practice as an IP attorney. During his career, he has obtained patent preparation/prosecution, transactional and litigation experience in the following technical areas: human and animal health pharmaceuticals (small molecule and protein therapeutics); drug discovery research technologies; animal health vaccines; seeds; and medical devices.
Mr. Darnley received his law degree from Indiana University-Bloomington School of Law where he was a member of the Law Review. Mr. Darnley also has a bachelor’s degree in Biology from Indiana University-Bloomington and a bachelor’s degree in History from the University of Notre Dame.
Mr. Darnley is a member of the Managing Directors committee for the Southwest Michigan Innovation Center (SMIC) in
Bob graduated from the University of Nebraska and then earned his PhD in Biochemistry from the University of California at Berkeley. Following postdoctoral work at Washington University Saint Louis, he joined the faculty at Duke University Medical Center. He rose through the ranks and became a James B. Duke Professor, Professor and Chair of Molecular Cancer Biology, Professor of Medicine and Acting Director of the Duke comprehensive Cancer Center. Bob trained 19 PhD students and 30 postdoctoral fellows or sabbatical scholars, published over 200 papers and was Associate Editor of a prestigious biological chemistry journal. He founded Sphinx Pharmaceuticals, the first biotechnology company to spin out of Duke. After 23 years, Bob left Duke to become VP Research of GlaxoWellcome to discover drugs. Bob served on the North Carolina Biotechnology Center’s Board of Directors and Executive Committee. Bob was a venture capitalist for 9 years where he served on several boards for biotech start-ups before retiring in 2010. He presently serves on three scientific advisory boards and one business advisory board. He continues to consult and mentor.
Bob is a serious gardener, and photographer. He enjoys his family, traveling with his wife, Barbara, wine, cooking, movies and music.