Task force

An academic task force consisting of key clinical and scientific experts from around the world has been established to help develop the future focus and structure of TREAT-NMD. Task force members play a key role in current and future activities of the Alliance whilst also guiding the development of the network's future strategy.

Individual's details are available below.


Annemieke Aartsma-Rus Annemieke Aartsma-Rus

Professor - Leiden University Medical Center

Dr. Annemieke Aartsma-Rus is associate professor at the Department of Human Genetics and leader of the DMD genetic therapy group. She is currently Chair of the executive committee of the TREAT-NMD alliance and is a member of the Project Ethics Council and TACT Committee.


Zohar Argov

Senior Academic Physician

Zohar Argov is a neurologist with a long-standing interest in muscle disorders. He first described the condition as Quadriceps-sparing or Inclusion body myopathy in Jewish patients which led to the identification of the causative gene. He is leading research programmes to develop better therapies for GNE myopathy (zohara@ekmd.huji.ac.il) and collaborates with Prof stella Mitrani-Rosenbaum's HIBM basic research laboratory.


Guillame Bassez Guillame Bassez

During the last decade, my experience has progressively broadened from an adult neurologist and histologist perspective to a translational research contributor. Then, as part of an international preclinical project evaluating new therapeutic components, my current work extends from animal transgenic model characterization and biomarker studies to outcome measures, natural history study and finally QoL assessment. I act as curator and co-coordinator of an international registry which enrols over 2,000 patients from 32 centres.

More Info


Christophe Béroud Christophe Béroud

Assistant Professor - INSERM

Christophe Béroud (PharmD, PhD): has 22 years experience in research laboratories and is an expert in bioinformatics (LSDBs) and molecular biology (diagnostic of DMC).


Enrico Bertini Enrico Bertini

Neurologist - Fondazione Telethon

Enrico Bertini MD (Neurologist): leading the Unit of Molecular Medicine, the section on Morphology, and the Neuromuscular Clinics.


Carsten Bonnemann Carsten Bonnemann

National Institute of Neurological Disorders and Stroke


Kate Bushby Kate Bushby

Professor of Neuromuscular Genetics - Newcastle University

Prof. Kate Bushby MD FRCP is a Professor of Neuromuscular Genetics. She is a clinical academic with joint appointments between Newcastle University and the NHS. The Muscle Team within the Institute of Genetic Medicine is a partner in the MRC Centre for Neuromuscular Diseases, of which Prof Bushby is Deputy Director.


Craig Campbell Craig Campbell

Pediatric Neurologist - London Health Sciences Centre

Dr Campbell practices at the Children’s Hospital-London Health Sciences Centre and at the University of Western Ontario, where he is an Associate Professor of Pediatrics, Clinical Neurology, and Epidemiology and Biostatistics. He is currently the medical director of the Pediatric Neuromuscular Clinic and the Pediatric Neurophysiology Laboratory.


Pierre Carlier Pierre Carlier

Director of the NMR laboratory - Institut de Myologie

Dr Pierre Carlier is a leading specialist in magnetic resonance imaging and spectroscopy of muscle with a particular interest in its development as a quantitative outcome measure.


Kay  Davies Kay Davies

Honorary Director, MRC Functional Genomics Unit., Head of Department. Co-Director, Oxford Centre of Gene Function - The Medical Research Council - MRC

Kay Davies’ research concerns the understanding of muscular dystrophy, particularly Duchenne muscular dystrophy and neurodegenerative diseases such as motor neuron disease and ataxia. 


Alberto Dubrovsky Alberto Dubrovsky

Director of Dept of Neurology and Director Neuromuscular Unit - Fundacion Favaloro Hospital Universitario

Professor Alberto Dubrovsky is a Neurologist dedicated to Neuromuscular Diseases. He is currently Director of the Department of Neurology and Director of Neuromuscular Disease Unit of the Neurosciences Institute at Fundacion Favaloro. He also serves as Medical Director of the Argentina Muscular Dystrophy Association since 1983. He is Professor of Neurology at the University of Buenos Aires for 23 years. Also has been designated as Full Professor of Neurosciences at the Favaloro University in 2008.

More Info


Alessandra Ferlini Alessandra Ferlini

Associate Professor in Medical Genetics, Director of the section of Medical Genetics - University of Ferrara

Alesandra Ferlini is a professor in medical genetics, director of the Medical Genetics section at the University of Ferrara (Italy), and coordinator of the EU funded BIO-NMD project. Her experience is in genetics of muscular disorders, and leads both research and innovative molecular diagnosis projects.  Within the context of the EU, she is member of TREAT-NMD ethical committee, of the European NeuroMuscular Centre , and partner of the NMD-CHIP EU project. She is granted by the Telethon Italy and other National funds.


Richard Finkel Richard Finkel

Chief, Division of Neurology - Nemours Childrens Hospital

Richard is a paediatric neurologist and Chief, Division of Neurology at the Nemours Children's Hospital in Orlando, Florida, USA.


Kevin Flanigan Kevin Flanigan

Professor of Pediatrics and Neurology - Ohio State University College of Medicine

Dr. Kevin Flanigan is a Professor of Neurology and Pediatrics at the Ohio State University, and a Principal Investigator at the Center for Gene Therapy at Nationwide Children's Hospital in Columbus, Ohio.  He has extensive experience in the design and development of patient registries, and has served as the Director of the United Dystrophinopathy Project, an NIH-funded genotype/phenotype database and registry.

More Info


Arnaldo Godoy Arnaldo Godoy

Professor of Neurology

Medical Degree from Sao Paulo University, Brazil. Residency in Clinical Neurology. PhD from Kyushu University, Japan. Fellow at the Children's National Medical Center, Washington D.C. Professor of Neurology at University City of Sao Paulo. Neurologist at Sao Paulo University.


Nathalie Goemans Nathalie Goemans

M.D - UZ Leuven

Dr Nathalie Goemans (M.D. PhD) is a paediatrician and child neurologist, with certification in rehabilitation medicine and is currently head of the Neuromuscular Reference Centre within the department of Paediatrics and Child Neurology at  the University Hospitals Leuven, Belgium, and consultant in neuropediatrics at DVC St Jozef Antwerp, Belgium, a rehabilitation centre with residential setting for neuromuscular patients.


Mike Hanna Mike Hanna

British Myology Society

Professor Michael G Hanna is a Consultant Neurologist and is also Clinical Director of the National Hospital for Neurology and Neurosurgery, Queen Square, part of UCLH NHS Foundation Trust.

He has a longstanding clinical and research interest in muscle diseases and is head of the Queen Square muscle disease clinical service. He is Director of the London-Newcastle MRC Centre for translational research in neuromuscular diseases-the central mission of the MRC Centre is to work closely with clinical and scientific colleagues across UCL and Newcastle to add value to basic science programmes and catalyse the pipeline from discovery to treatment. The centre has established new core activities to overcome gaps in translation, including a neuromuscular clinical trials centre, an animal model unit, a UK muscle cell-line biobank, an outcome measure activity which includes neuromuscular MRI and a translational research PhD programme.


Eric Hoffman Eric Hoffman

Director, Research Center for Genetic Medicine & The Wicker Project for Muscular Dystrophy Research - CINRG

Eric Hoffman, PhD earned his PhD in Genetics at Johns Hopkins University and then pursued post-doctoral training with Louis Kunkel at Boston Children’s Hospital working on Duchenne muscular dystrophy gene and protein identification. Eric is currently Vice Chair of the TREAT-NMD Executive Committee.


Isabel Illa Isabel Illa

Chief Neuromuscular Diseases, Neurology Department - Hospital Sant Pau

Professor Isabel ILLA is Chief of Neuromuscular Diseases at Hospital Santa Creu i Sant Pau (HSCSP), Universitat Autònoma de Barcelona were she trained as a neurologist. After completing her PhD thesis on Myasthenia Gravis she worked as a neurologist with special interest in neuromuscular diseases at HSCSP. She was a visiting associate at the U.S. National Institutes of Health, NINDS, Neuromuscular Diseases Section from 1989 until 1992. In 2005 she was appointed Chair of Neurology at the Universitat Autònoma de Barcelona.


Robert 'Berch' Griggs Robert 'Berch' Griggs

Professor of Neurology, Medicine, Pathology and Pediatrics - University of Rochester

Dr. Griggs is Professor of Neurology, Medicine, Pathology and Pediatrics at the University of Rochester School of Medicine and Dentistry. He was Chair of the Department of Neurology and Neurologist-in-Chief at Strong Memorial Hospital from 1986 to 2008. He also held the Edward A. and Alma Vollerstein Rykenboer Chair in Neurophysiology at the University of Rochester. He received his BA from the University of Delaware and his M.D. from the University of Pennsylvania.


Veronika Karcagi Veronika Karcagi

Head of Department of Molecular Genetics and Diagnostics - Semmelweis University

Dr. Veronika Karcagi, PhD is Head of Department of Molecular Genetics and Diagnostics at the National Institute of Environmental Health in Budapest. She graduated as a biologist MSc. at the Eötvös Lorand University, Budapest in 1975.


Janbernd Kirschner Janbernd Kirschner

Director of the Department of Neuropediatrics - University Hospital Bonn

Jan Kirschner (Professor of Pediatric Neurology) is chair of the TREAT-NMD executive committee since 2018. Jan has been joint coordinator of the German network for neuromuscular disorders MD-NET (www.md-net.org) since 2008. He has been involved in planning and conducting several multicentre clinical trials. He was responsible for the coordination of a large multi-centre, placebo-controlled MD-NET trial in Duchenne muscular dystrophy. Jan has established the Care and Trial Site Registry (CTSR) containing feasibility information about neuromuscular centres worldwide.

Jan has coordinated the CARE-NMD project funded by the European Union (2010-2013)  with the aim to improve standard of care for Duchenne muscular dystrophy throughout Europe (www.care-nmd.eu). He has a long-standing interest in the diagnosis and treatment of myopathies, muscular dystrophies, and motoneuron diseases in children and adolescence. He is an experienced clinical researcher in this area. Jan and his team have established the SMArtCARE network to collect real-world data for patients with SMA in German speaking countries (www.smartcare.de).


Rudolf Korinthenberg Rudolf Korinthenberg

Director, Neuropediatrics and Muscular Disorders - University Medical Center Freiburg

Prof. Rudolf Korinthenberg, MD is head of the Department of Neuropediatrics and Muscular Disorders at Children’s Hospital, University Hospital Freiburg. He received his pediatric and neuropediatric training at University Hospital Münster/Westfalia and holds his actual position since 1990.


Nicolas Lévy Nicolas Lévy

University Professor and Hospital Practitioner in Genetics - INSERM

Nicolas's activity is mainly focused on the genetics and cell biology of neuromuscular disorders (NMDs). At the diagnosis level, in the last 12 years, his laboratory has set-up specific protocols towards exploring most genes involved in peripheral neuropathies (CMTs) and LGMDs together with the exploration of numerous other NMDs (DMD/BMD, FSH, IBM/GNE) and laminopathies. 


Hanns Lochmüller Hanns Lochmüller

Professor of Experimental Myology - University Medical Center Freiburg

Professor Hanns Lochmüller trained as a neurologist in Munich (Germany) and Montreal (Canada). He was chair of experimental myology in the neuromuscular research group at the Institute of Genetic Medicine of Newcastle University in 2007-2017. He was the first elected Chair of the TREAT-NMD Alliance Executive Committee.


Silvère van der Maarel Silvère van der Maarel

Professor of Medical Epigenetics at the Department of Human Genetics - Leiden University Medical Center

Prof. Dr. Silvère van der Maarel is Professor of Medical Epigenetics and head of the Department of Human Genetics of the Leiden University Medical Center. His research focus is on the (epigenetic) disease mechanisms underlying facioscapulohumeral muscular dystrophy (FSHD). Other research themes include oculopharyngeal muscular dystrophy (OPMD) and the limb girdle muscular dystrophies (LGMD). By means of intracellularly expressed antibody domains he aims to uncover disease mechanisms in muscular dystrophy.


Eugenio Mercuri Eugenio Mercuri

Professor of Pediatric Neurology - Università Cattolica del Sacro Cuore

Eugenio Mercuri Md PhD (Associate Professor in Pediatric Neurology): areas of expertise: congenital muscular dystrophy, outcome measures and assessment tools in neuromuscular disorders.


Jerry Mendell Jerry Mendell

Director, Center for Gene Therapy & Professor of Pediatrics, Neurology & Pathology - Nationwide Children's Hospital

Jerry is the Director of the Centre for Gene Therapy and a Professor of Pediatrics, Neurology, and Pathology with extensive experience in translational neuromuscular disease research including clinical trials. He completed his residency in Neurology at the Neurological Institute at Columbia University, and trained in neuromuscular disease at the Medical Branch of Neurology at NIH.


Clemens Müller-Reible Clemens Müller-Reible

Professor of Human Genetics - University of Würzburg

Clemens Müller-Reible is Professor of Human Genetics at the University of Wuerzburg. He trained as a molecular geneticist and has been director of the DNA diagnostic laboratory since 1985 with a focus on neuromuscular and coagulation disorders.


Francesco Muntoni Francesco Muntoni

Director of The Dubowitz Neuromuscular Centre - University College London

Francesco Muntoni (Professor in Pediatric Neurology, FRCPCH, FMedSci) is Director of the Unit with oversight of both clinical and research activities.


Ichizo Nishino Ichizo Nishino

Director, Department of Neuromuscular Research - National Institute of Neuroscience - National Center of Neurology and Psychiatry

After having 5 years of clinical neurology training, Dr. Nishino started muscle disease research from 1994 under the tutelage of Dr. Ikuya Nonaka, who remained a steadfast source of inspiration. Later, his postdoctoral research for two years at Columbia University solidified his yearning to focus on research. In 2001, he was appointed directorship of the current Department of Neuromuscular Research and since then, he has been directing his team on the research to elucidate the pathomechanism and develop the therapy for hereditary muscle diseases, including DMRV/hIBM and various muscular dystrophies.


Kathy  North Kathy North

Co-Chair, Australasian Neuromuscular Network - ANN; Director, Murdoch Childrens Research Institute; David Danks Professor of Child Health Research, University of Melbourne - Australasian Neuromuscular Network - ANN

Professor Kathryn North was appointed as Director of the Murdoch Childrens Research Institute, Director of the Victoria Clinical Genetics Service and the David Danks Professor of Child Health Research at the University of Melbourne in February 2013.

More Info


Jes Rahbek Jes Rahbek

The Rehabilitation Centre for Neuromuscular Diseases

Jes is a specialist in neuromuscular rehabilitation and also a volunteer in Muskelsvindfonden, the Danish patient organization for NMD. Additionally Jes is Chairman of Muskelsvindfonden's 1) scientific committee, 2) ethical committee and 3) international relations committee.

He represents Muskelsvindfonden in the ENMC where he has just been elected Chairman of the Executive Committee.
Jes works as Chief Medical Officer and Director of the Danish National Rehabilitation Centre for Neuromuscular Diseases and is an associated partner in CARE-NMD which is a DMD project under TREAT-NMD.


Mary Reilly Mary Reilly

Consultant Neurologist - UCL Institute of Neurology

Dr Mary M Reilly is Consultant Neurologist at the National Hospital for Neurology and Neurosurgery in London with a clinical and research interest in peripheral nerve disorders especially inherited neuropathies. 


Michael Rose Michael Rose

Consultant Neurologist - Kings College London

Michael Rose (PhD, FRCP) : Editor Cochrane Neuromuscular Disease Group. More than 50 original articles in journals. Systematic review writer and outcome measurement expert.


Markus A. Rüegg Markus A. Rüegg

Professor of Neurobiology - Biozentrum / University of Basel

Dr. Markus Rüegg is Professor for Neurobiology at the Biozentrum, University of Basel, Switzerland. He studied Biochemistry and Neurobiology in Zurich and Stanford and was co-founder and member of the management of MyoContract, now called Santhera Pharmaceuticals, a biotech company that dedicated to develop therapies for neuromuscular diseases.

Dr. Rüegg is an internationally recognized expert in neuromuscular research and has published numerous scientific papers in the field of neuromuscular research. In recent years, his work has also been devoted to the study of therapeutic interventions in mouse models for congenital muscular dystrophy. Dr. Rüegg is also partner of the network TREAT-NMD.


Benedikt Schoser Benedikt Schoser

Professor of Neurology and Senior Consultant - Friedrich-Baur Institut, Ludwig-Maximilians University Munich

Professor Benedikt Schoser is senior consultant at the Friedrich-Baur Institute, Dept. of Neurology at the Ludwig-Maximilians-University of Munich, Germany. He is coordinator of the diagnostic working group within the German MD-NET and member of the German reference group for neuromuscular disorders.


Thomas Sejersen Thomas Sejersen

Associate Professor, Astrid Lindgrens Barnsjukhus - Karolinska Institute

Thomas Sejersen holds positions as Professor in Neuropediatrics at the Department of Women's and Children's Health of Karolinska Institute and consultant paediatrician at the Astrid Lindgrens Barnsjukhus (Stockholm, Sweden).


Michael Shy Michael Shy

Michael E. Shy, MD, is Director of the Charcot-Marie-Tooth (CMT) Clinic and Codirector of the Neuromuscular Program at Wayne State University, Detroit, MI. He has published extensively on inherited disorders of the peripheral nervous system. Dr. Shy was the chief organizer of the International Charcot-Marie-Tooth Consortium held in Snowbird Utah in 2007.


Volker Straub Volker Straub

Professor of Neuromuscular Genetics - Newcastle University

Professor Volker Straub was founding joint co-ordinator of TREAT-NMD, and is an executive board member of the World Muscle Society and R&D Director of the North Tees and Hartlepool NHS Foundation Trust.


Lee Sweeney Lee Sweeney

Professor and Chair of the Department of Physiology at Perelman School of Medicine of the University of Pennsylvania

H. Lee Sweeney, Ph.D., is the William Maul Measey Professor and Chair of the Department of Physiology at Perelman School of Medicine of the University of Pennsylvania. Dr. Sweeney earned both a master's degree in physiology and a doctorate in physiology and biophysics from Harvard University.


Kathy Swoboda Kathy Swoboda

Associate Professor, Neurology and Pediatrics Director, Pediatric Motor Disorders Research Program - University of Utah

Dr. Kathy Swoboda received subspeciality training in neurology, genetics and neurophysiology at Harvard University and affiliated programs. She currently directs the Pediatric Motor Disorders Research Program at the University of Utah School of Medicine, Salt Lake City, USA, where she is an associate professor in the Departments of Neurology and Pediatrics.


Shin'ichi Takeda Shin'ichi Takeda

Director general of Translational Medical Center

Shin’ichi Takeda is currently the Director of Translational Medical Center (2008-) and also the Director of Department Molecular Therapy, National Institute of Neuroscience (2000-) in the National Center of Neurology and Psychiatry. He is also a guest Professor in the Tokyo Medical and Dental University and in Tokushima University.


Charles Thornton Charles Thornton

University of Rochester


Eduardo Tizzano Eduardo Tizzano

Spanish SMA Registry - Hospital Sant Pau

Born in La Plata Argentina, Eduardo is a specialist in Pediatrics and Medical Genetics also he is the Principal Investigator of the U-705 CIBERER. He is devoted to diagnosis and research in SMA at the Hospital of Sant Pau of Barcelona, a reference Center for SMA diagnosis from all over Spain.


Haluk Topaloğlu Haluk Topaloğlu

Professor of Paediatrics and Neurology - Hacettepe University

Professor Haluk Topaloglu has held the position of professor of paediatrics and neurology at Hacettepe University School of Medicine in Ankara, Turkey since 1996. After completing his residency in paediatrics at Hacettepe University Children’s Hospital in 1982, he completed a fellowship in child neurology at the University of Calgary Department of Paediatrics in Alberta, Canada in 1985. He then held the Christine Saunders Memorial Fellowship in Neuromuscular Disorders at the Royal Postgraduate Medical School of Hammersmith Hospital, Department of Paediatrics and Neonatal Medicine in London, England, in 1995. 


Antonio Toscano Antonio Toscano

University of Messina


Bjarne Udd Bjarne Udd

University of Tampere


J. Andoni Urtizberea J. Andoni Urtizberea

Consultant, Hendaye / Head, Summer School of Myology, Paris - Hôpital Marin de Hendaye

Dr Jon Andoni Urtizberea is head of the internationally renowned Paris Summer School of Myology and a consultant at the neuromuscular reference centre at Hendaye Hospital in the French Basque region.


Peter Van den Bergh Peter Van den Bergh

Professor of Neurology - Universite Catholique de Louvain

Peter Van den Bergh is a neurologist, who is director of the Neuromuscular Reference Centre , of the EMG laboratory, and of the neuromuscular pathology laboratory, located at the Cliniques Universitaires St. Luc in Brussels.


John Vissing John Vissing

University of Copenhagen


Thomas Voit Thomas Voit

Medical and Scientific Director - Institut de Myologie

Thomas currently holds the positions of Professor of Pediatrics (Professeurs des Universités –Praticien Hospitalier), Université Pierre et Marie Curie Paris VI, Scientific and Medical Director, Institut de Myologie, Groupe Hospitalier de la Pitié-Salpêtrière, Paris and Director, Mixed Research Unit UMR_S 974 UPMC-INSERM-CNRS-AIM.


Carina Wallgren-Pettersson Carina Wallgren-Pettersson

Consultant in Medical Genetics, Principal Investigator, University Teacher - Helsingin yliopisto - University of Helsinki

Carina Wallgren-Pettersson, M.D., Co-Convenor of the ENMC  International Consortium on Nemaline Myopathy, Principal Investigator and Teacher at the Department of Medical Genetics, University of Helsinki and the Folkhälsan Research Centre, Head and Consultant in Medical Genetics at  the Folkhälsan Department of Medical Genetics, organiser of numerous international workshops on myotubular myopathy and nemaline myopathy as well as on other muscle disorders.


Maggie Walter Maggie Walter

Associate Professor of Neurology - Friedrich-Baur Institut, Ludwig-Maximilians University Munich

Maggie Walter is Associate Professor of Neurology at the Ludwig-Maximilians-University of Munich. She has trained as a neurologist at the LMU Munich, and is working at the Friedrich-Baur-Institute, the neuromuscular department of the LMU, in leading position. Furthermore, she graduated with a master degree in management of social and health institutions.

More Info


Otto-Wilhelm Merten Otto-Wilhelm Merten

Head of Applied Vectorology and Innovation - Généthon

Otto-Wilhelm Merten has a degree in biotechnology. He has been working at Généthon since 1997 where he was in charge of the bioprocess development department for development of large scale manufacturing processes of viral vectors. Today he directs the group of applied vectorology and innovation.


Jan Verschuuren Jan Verschuuren

Head of Neuromuscular Section, Department of Neurology - Leiden University Medical Center

Jan Verschuuren is a neurologist and professor of Neuromuscular Disease at the LUMC. The main research topics of his group are Duchenne and Becker muscular dystrophy, myasthenia gravis and related disorders and inclusion body myositis. He is the clinical representative for the LUMC in TREAT-NMD, and president of the Dutch Neuromuscular Centre (www.ISNO.nl). Jan is chair of the TREAT-NMD Global Database Oversight Committee (TGDOC).


Marianne de Visser Marianne de Visser

Neurologist, Professor of Neuromuscular Disorders - Amsterdam Medical Centre

Marianne has been the leader of the neuromuscular group at the Academic Medical Centre in Amsterdam in the Netherlands for more than 20 years. During this time her group has contributed to research on muscular dystrophies, myositis, motor neuron diseases and hereditary neuropathies. Her areas of interest include myositis, hereditary neuropathies, motor neuron disease, post polio syndrome.

12 Apr 2017