Chad Heatwole, MD, MS-CI
 
Dr. Heatwole is the founder and CEO of The Neuromuscular Institute of Quality-of-Life Studies and Outcome Measure Development.  Dr. Heatwole is a research neurologist with extensive training in therapeutic development, neuromuscular disease, and disease-specific patient reported outcome measure development. 
Dr. Heatwole received a degree in engineering science and mechanics at Virginia Tech and a subsequent degree in medicine at the Medical College of Virginia in 2001. After completing his neurology residency at the University of Rochester, Dr. Heatwole completed two fellowships: one in electrophysiology and a second in neuromuscular experimental therapeutics. In 2010 he obtained a master’s degree in clinical investigation at the University of Rochester.  Dr. Heatwole currently leads
an international network for the design and creation of disease-specific outcome measures for use in translational research.  Members of this network include patients, neuromuscular researchers, members of patient advocacy groups, psychometricians, statisticians, linguists, and members of the PROMIS and NeuroQol organizations.  This network also includes members from ten research institutions nationwide and seven international collaborations.  Dr. Heatwole’s research interest is the development, validation, and analysis of patient relevant outcome measures for use in drug labeling trials. Dr. Heatwole also has interest in the development, evaluation, and testing of novel experimental therapeutics for neuromuscular disease.  Dr. Heatwole founded the Neuromuscular Institute of Quality-of-Life Studies and Outcome Measure Development in 2012 and is currently a practicing neuromuscular faculty member at the University of Rochester in New York. 
 
Richard T. Moxley, III, MD
 
Dr. Moxley, an Alabama native, received his MD from the University of Pennsylvania School of Medicine after obtaining his BS in biochemical sciences at Harvard College. While at Penn he met his bride and they have a daughter, son, and two grandsons. He completed internship at Pennsylvania Hospital after which he worked for two years in exercise cardiology assigned to NASA Headquarters from the NIH Heart Disease and Stroke Control Program. In 1969 he returned to Boston, completed his neurology residency at the Harvard Longwood Program, and in 1972 traveled to Johns Hopkins for a two year NIH Special Fellowship in endocrinology to receive training in human forearm metabolism. In 1974 he joined the Department of Neurology at the University of Rochester Medical Center (URMC) and has remained in Rochester. Dr. Moxley is professor of neurology and pediatrics. His research has focused on the pathophysiology of muscle wasting and myotonia, and therapeutic trials in the muscular dystrophies, most recently myotonic dystrophy. He served four months as interim Chair and now has resumed his responsibilities as Associate Chair of Neurology, Director of the Neuromuscular Disease Center, Director of the Paul D. Wellstone Muscular Dystrophy Cooperative Research Center, Director of the NIH National Registry of Myotonic Dystrophy and FSHD Patients and Family Members, Co-Director of the URMC CRC, and Co-director of the URMC Clinical Translational Sciences Institute Pilot and Collaborative Studies key function.
 
Nicholas Johnson, MD
 
Dr. Johnson is a director of The Neuromuscular Institute of Quality-of-Life Studies and Outcome Measure Development.  Dr. Johnson has spent the past six years working to develop quality of life instruments for neuromuscular disorders.  He is originally from Phoenix, Arizona.  He completed his Bachelor’s of Science and Medical Degrees at the University of Arizona in Tucson, Arizona.  Nicholas has completed his residency training, a fellowship in neuromuscular medicine and a fellowship in Experimental therapeutics at the University of Rochester and is currently an Assistant Professor of Neurology at the University of Utah.  He has received prior grant funding from the Myotonic Dystrophy Foundation and the NIH Loan Repayment program.  His specific research focus is in congenital and childhood myotonic dystrophy, as well as developing pediatric outcome measures.  .