Advisory Board

Medical Advisory Board

Richard Barohn, MD Dr. Richard J. Barohn is Chairman of the Department of Neurology at the University of Kansas Medical Center in Kansas City. He is also the Gertrude and Dewey Ziegler Professor of Neurology, and University of Kansas Distinguished Professor. Dr. Barohn is a graduate of the University of Missouri – Kansas City School of Medicine. He completed a neurology residency at Wilford Hall USAF Medical Center and then completed a neuromuscular fellowship at Ohio State University.
 
Dr. Barohn is board certified in adult neurology with added qualifications in clinical neurophysiology. He holds membership in several professional societies, including the American Academy of Neurology (fellow status), the American Neurological Association, and the Association of University Professors of Neurology. Dr. Barohn has served on the national medical advisory boards for the Myasthenia Gravis Foundation and the Guillain-Barre Syndrome Foundation International and The Myositis Association.
 
Dr. Barohn is the author of more than 200 journal publications and over 40 book chapters on various aspects of neuromuscular disease. He is the principal investigator on the NIH Clinical and Translational Science Award and the NeuroNEXT grant at KUMC. He is the Director of Frontiers: The Heartland Institute for Clinical and Translational Research. He has served on the editorial board for Neurology and is the Associate Editor for the Journal of Clinical Neuromuscular Disorders. He was the Founding Chair of the Section of Neuromuscular Disease in the American Academy of Neurology.
 
Richard Bedlack, MD, PhD Dr. Rick Bedlack is currently a tenured Associate Professor of Medicine/Neurology at Duke, Director of the Duke ALS Clinic, and Chief of Neurology at the Durham Veterans Affairs Medical Center. He has won awards for teaching and patient care, including best Neurology teacher at Duke, Health Care Hero, Strength Hope and Caring Award, America’s Best Doctor, and the American Academy of Neurology Patient Advocate of the Year. He has received ALS research grants, participated in ALS clinical trials, published more than 60 ALS articles and recently edited a new book called ALS: A Patient Care Guide for Clinicians.
 
Dr. Bedlack is the outgoing Chairman of the North American ALS Research Group (ALSRG) and leader of the international ALSUntangled program which utilizes social networking to investigate alternative and off label treatment options for patients with ALS. Dr. Bedlack grew up in a small town in central Connecticut. He went to college at William and Mary in Virginia, then back to Connecticut for an MD and PhD in Neuroscience at UConn. Finally, he came to Duke where he completed his Medicine internship, Neurology Residency, Neuromuscular Fellowship, and Masters in Clinical Research Science.
 
Todd Levine, MD Dr Levine is a graduate of Duke Medical School. His neurology residency and fellowship in neuromuscular diseases were completed at Washington University in St Louis. He joined Phoenix Neurological Associates in 1999. Since that time he has created and directed the peripheral neuropathy center at Good Samaritan Hospital as well as the ALS clinic at Good Samaritan Hospital where he is the director of the Neurophysiology Department.
 
Dr. Levine is the past-president of the Arizona Neurology Association. He conducts phase II-IV clinical research in multiple fields of neuromuscular diseases including neuropathy, myositis, and ALS. He continues to publish in peer reviewed journals and to teach courses at the American Academy of Neurology and the American Association of Neuroelectrodiagnostic Medicine.
 

Business Advisory Board

Mark Boulding Mark Boulding is the Executive Vice President & Chief Legal Officer of PTC Therapeutics, Inc., a privately-held biopharmaceutical company located in South Plainfield, NJ. His responsibilities include negotiation of licensing arrangements, business development transactions, and grant agreements, interactions with the government and universities on technology transfer and contracting matters, development and management of PTC’s intellectual property portfolio, and management oversight of the finance, legal, quality assurance, regulatory and human resources departments and related functions.
 
Prior to working for PTC, Mr. Boulding was the General Counsel and Executive Vice President, Government and Regulatory Affairs of MedicaLogic/Medscape, Inc., a publicly-traded company offering healthcare software and information products to physicians and consumers. He joined MDLI following its acquisition in 2000 of Medscape, Inc., where he was also General Counsel and Vice President, Regulatory Affairs. Before Medscape, Mr. Boulding was a law firm partner in private practice in Washington, DC specializing in healthcare and technology law, with a focus on pharmaceutical, biotech, and high-tech companies. He is a member and past chair of the BIO General Counsels’ Committee. Mr. Boulding received his J.D. from the University of Michigan and his B.A from Yale College. He is admitted to practice law in New York State and the District of Columbia, and has a limited in-house license to practice law in New Jersey.
 
Maria Hardin Maria Hardin has more than 26 years of experience in the non-profit sector, building and managing more than 40 medication patient assistance programs and eight Expanded Access Programs, two of which were for ALS therapies. Since her retirement as vice president of patient services with the National Organization for Rare Disorders (NORD) in 2010, she now works with JF Campbell Consultants. Clients include the pharmaceutical and biotech industries, non-profit health organizations, and specialty pharmacies. Her expertise is in strategic planning and business development of drugs and biologics, with emphasis on collaborating with the industries in developing sound EAPs for experimental therapies. Ms. Hardin has participated in numerous round tables for the purpose of encouraging an open dialogue among patient advocates, researchers, pharma/biotech industry leaders, and officials from the FDA.
 
Ronald Marchesani Ronald Marchesani is vice president and director of quality assurance at Onyx Pharmaceuticals. His organization is responsible for the Global Release and Quality oversight of clinical and commercial drug products for oncology. The Quality organization is responsible for GxPs (GMPs, GCPs, GLPs) and OE (Operational Excellence) for the Global R&D organization.
 
Mr. Marchesani has also held various Quality leadership positions with several biologics and biopharmaceutical companies. He has worked on key novel products, including pandemic flu, the 2nd generation smallpox vaccine, and the first therapeutic treatment for Type I Gaucher disease, Ceredase. Ronald has been invited as a speaker at numerous events and has spoken on topics dealing with diverse Regulatory GMP expectations during product development, regulatory inspections and GMP compliance audits.
 
David Rosen, PhD Dr. Rosen has over 25 years of experience in the pharmaceutical, biotechnology, and medical device industries and has served on the management teams for both public and private companies for the last 15 years. His experience covers both research and development, including preclinical development, CMC, and project management. His projects have covered the spectrum from discovery of novel therapeutic candidates through completion of phase 3 clinical trials in both the US and Europe. Therapeutics developed have included small molecules, synthetic peptides, and recombinant proteins.
 
Dr. Rosen began his career at Collagen Corporation, a medical device company, where he held scientific and project management positions working on orthopedic and soft tissue augmentation programs. His career continued with Celtrix Pharmaceuticals after it spun off from Collagen Corp enabling him to expand his experience in the CMC and facilities areas. He then spent approximately 3 1/2 years at Hyseq Pharmaceuticals where, as Vice President of Operations, he had responsibilities for preclinical development, CMC, and facilities before moving to Acologix Inc. as Sr. Vice President of R&D. Dr. Rosen received his Ph.D. in biochemistry at the University of California, Riverside

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