Senior Scientist, CHEO Research Institute
Professor of Neurology, University of Ottawa Faculty of Medicine and The Ottawa Hospital Department of Medicine.

Hanns Lochmüller is a neurologist and clinical academic specializing in genetic neuromuscular disorders and rare disease. He is Senior Scientist at the Children’s Hospital of Eastern Ontario (CHEO) Research Institute. He also holds appointments as Professor of Neurology in the University of Ottawa Faculty of Medicine and the Department of Medicine, Division of Neurology at The Ottawa Hospital. He is affiliated with the University of Ottawa Brain and Mind Research Institute and Department of Cellular and Molecular Medicine and with the Ottawa Centre for Neuromuscular Disease.

Hanns trained as a neurologist in Munich, Germany and in Montreal, Canada. From 2007 to 2017, he held the chair of experimental myology at the Institute of Genetic Medicine at Newcastle University in the UK. He continues to hold a scientific appointment at the Department of Neuropediatrics and Muscle Disorders of the Medical Center – University of Freiburg in Germany and as visiting scientist at the Centro Nacional de Análisis Genómico (CNAG), Barcelona in Spain.

His research interests include molecular therapies of neuromuscular disorders; molecular pathogenesis of muscle and neuromuscular junction disorders; neurogenetics and translational research; data sharing and -omics in neuromuscular and rare diseases; and genomics and systems medicine. In addition to his scientific and clinical research interests, he is internationally active in rare disease science policy and research collaborations. He chaired the Interdisciplinary Scientific Committee of the International Rare Diseases Research Consortium (IRDiRC) and the Executive Committee of the TREAT-NMD Alliance. He initiated and coordinated the highly successful “RD-Connect” international infrastructure for rare disease data and biosample sharing and analysis, is co-founder and former coordinator of the German muscular dystrophy network (MD-NET), and former scientific coordinator of EuroBioBank, a European (and Canadian) network of biobanks for rare disorders.

Hanns’s clinical activities focus on clinical research and care of patients with rare neuromuscular disorders, including myotonic dystrophy (DM1), spinal muscular atrophy (SMA), muscular dystrophy and congenital myasthenic syndromes (CMS). He has a strong commitment to working with patients and patient organizations in Canada, as he has with organizations in Europe for many years.


Nicholas E. Johnson, MD, MSCI, FAAN is the Director of the Center for Inherited Myology Research (CIMR), professor, and vice chair of research in Neurology at Virginia Commonwealth University. He received his undergraduate degree in molecular and cellular biology and psychology at the University of Arizona. He then obtained his medical degree at the University of Arizona. He completed his neurology residency and combined fellowship in neuromuscular medicine and experimental therapeutics at the University of Rochester.
He leads the GRASP-LGMD consortium, which focuses on developing clinical outcomes and biomarkers in the limb girdle muscular dystrophies and co-leads the Myotonic Dystrophy Clinical Research Network which focuses on developing clinical outcomes and biomarkers in the myotonic dystrophies.  Both networks include sites across the United States, Europe, Canada, and New Zealand with multiple natural history protocols.  His laboratory is focused on identifying the pathogenesis and progression of myotonic dystrophy, and biomarkers in limb girdle muscular dystrophy. Johnson conducts genetic therapeutic trials using both viral and non-viral approaches in many inherited nerve and muscle disorders, including limb girdle muscular dystrophy, myotonic dystrophy, and facioscapulohumeral muscular dystrophy.