Live Discussions

Drs. Jerry Mendell and Brian Kaspar are investigators in the follistatin gene therapy trial for inclusion-body myositis patients now underway at Nationwide Children's Hospital.

Michelle Greer answers questions about reimbursement and coverage issues with public and private insurers and the treatment you need for your disease. Michelle Greer is the vice president of sales for NuFACTOR and has been working with patients receiving IVIG for more than ten years.

Acthar, the only FDA-approved drug for myositis, has been available to treat myositis for years, but just recently has drawn attention because of Dr. Levine's small study resulting in the improvement of several patients who had not responded to other drugs.

Dr. Levine, who is on TMA's medical advisory board, is a member of Phoenix Neurological Associates. He is the founder and director of the Samaritan ALS clinic and co-director of the neurophysiology department at Banner Good Samaritan Medical Center.

Dr. Chester Oddis, a founding medical advisory board member of TMA, answers questions about the most ambitious study ever undertaken for a myositis drug. The RIM study focused on Rituximab in treating adults and children who have dermatomyositis or polymyositis. Dr. Oddis, who was the lead investigator for the multi-center study, is a professor of medicine in the department of Rheumatology and Clinical Immunology at the University of Pittsburgh and the director of the fellowship training program there. He has written extensively on the diagnosis and management of patients with myositis.

Psychologist Amy Wood, who has helped countless adults with all kinds of challenges to identify and accomplish what's meaningful for them, will host a live discussion for patients with myositis. Dr. Wood, who has a myositis patient in her family, is an author ("Life Your Way: Refresh Your Approach to Success and Breathe Easier in a Fast-paced World"), is a speaker and a columnist as well as a psychologist in private practice in Portland, Maine. To learn more about her, go to her website at www.amywoodpsyd.com.

John Bargas graduated from Northern Arizona University with a master's degree in physical therapy and has been in physical therapy for 20 years, 14 of them in neurological physical therapy. During the last nine years he has been a part of the neurosciences clinic at Banner Good Samaritan Medical Center as part of a comprehensive team. Bargas evaluates patients at the clinic and creates a specific PT plan of care for each client to make sure that clients achieve their goals.

Diane Johnson graduated from the University of Washington with a B.S. in occupational therapy and worked in the rehab department at Northwest Hospital in Seattle before moving to the Banner Good Samaritan Rehabilitation Institute in Phoenix. She works for Banner in its multi-disciplinary clinics that include both neurodegenerative diseases and movement disorders and is the primary OT on the clinic team, with the goal of helping patients have an improved quality of life. She also has a specialty in wheelchair seating.

Dr. Brian Feldman, a pediatric rheumatologist, is Professor of Pediatrics, Medicine, Health Policy Management & Evaluation, at the University of Toronto and Division Head of Rheumatology at The Hospital for Sick Children in Toronto.

Dr. Feldman's main focus is clinical research in the field of childhood rheumatic disease. Recognizing the challenges involved in the study of rare disease Dr. Feldman has worked to improve the tools available to assist in this research. He has worked at developing and refining outcome measurement tools for use in clinical trials and in outcome studies.

Dr. Feldman is a member of the TMA Medical Advisory Board, the Pediatric Rheumatology Collaborative Study Group, the Canadian Alliance of Pediatric Rheumatology Investigators, the International Myositis Assessment Criteria study group, and other collaborative organizations. He was one of the founding members of the Childhood Arthritis and Rheumatology Research Alliance (CARRA), and was the head of the protocol evaluation subcommittee and chair of the Juvenile Dermatomyositis subcommittee.

Dr. Sonye Danoff of the Johns Hopkins Myositis Center will answer questions about myositis-associated lung problems Thursday, October 6, 2011 at 12 Noon EST.

Dr. Danoff is an Assistant Professor in the Division of Pulmonary and Critical Care Medicine and Co-Director of the Hopkins Interstitial Lung Disease Clinic. She is a specialist in diseases causing fibrosis or scarring in the lung, particularly those associated with autoimmune diseases including myositis. Her research focuses on basic and translational studies of lung fibrosis. She was awarded the 2007 American Thoracic Society/Coalition for Pulmonary Fibrosis Research Award to support her research studies. She has also been a recipient of grants from the National Institutes of Health, the Mid-Atlantic American Heart Association and the American Lung Association.

Dr. Tahseen Mozaffar will be featured in a live discussion about the use of IVIG in myositis treatment on Wednesday, May 18 at 4 pm ET. Dr Mozaffar is a neurologist, an associate professor of neurology at the University of California (Irvine) School of Medicine, and he directs the neuromuscular program at the UCI School of Medicine. He is also the director of the UCI-MDA ALS and Neuromuscular Center. He is a member of TMA's medical advisory board.

Dr Anthony Amato is the vice-chairman of the Department of Neurology and the Director of the Neuromuscular Division and Clinical Neurophysiology Laboratory at Brigham and Women's Hospital in Boston and a Professor of Neurology at Harvard Medical School. He is the chair-elect of the Neuromuscular Section of the American Academy of Neurology. He is the director of the Partners Neuromuscular Medicine fellowship program. His extensive research and published work reflects his long-time interest in DM, PM and IBM.