Project ethics council - PEC
The Project Ethics Council identifies and examines ethical and social aspects of research taking place in the context of TREAT-NMD.
The PEC is a voluntary multidisciplinary group comprised of clinicians, scientists, parents, ethicists and legal academics, patients and representatives of parent organisations. The PEC works in a collegiate, collaborative and inclusive manner to provide ethical guidance and balanced opinion in order to enhance the excellence TREAT-NMD aspires to.
Membership of the PEC is voluntary and drawn from the initial TREAT-NMD partner network, interest groups and invited external members. Members with special expertise, patient representatives, and other relevant groups may be co-opted as necessary.
Associate Professor - Leiden University Medical Center
Dr. Annemieke Aartsma-Rus is a senior postdoc at the Department of Human Genetics and leader of the DMD genetic therapy group. She is the scientific representative of the LUMC in the TREAT-NMD governing board.
Associate Professor in Medical Genetics, Director of the section of Medical Genetics - University of Ferrara
Alesandra Ferlini is a professor in medical genetics, 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 contxt of the EU, she is member of TREAT-NMD ethical committee, of the European NeuroMuscular Centre , and partner of the NMD-CHIP EU project.
University of Sheffield
Leader of Neuromuscular Diseases Centre, - National Institute of Environmental Health - NIEH
Dr. Agnes Herczegfalvi MD, PhD is a pediatric neurologist and member of the National Standardization Committee of Neurologists.
Assistant Project Manager - Newcastle University
Emma Heslop joined the TREAT-NMD network in December 2006 as TREAT-NMD assistant project manager. Within TREAT-NMD she is responsible for leading the work relating to shared activities and tools; enhancing international relations and collaborations; coordinating the TREAT-NMD Advisory Committee for Therapeutics and representing the coordination office on the Project Ethics Council.
Consultant - Lakeside Regulatory Consulting Services Ltd
Joseph Irwin became a Member of the Jennifer Trust for Spinal Muscular Atrophy after his first son Toby was diagnosed with Type I SMA. Joseph, who is a biochemist-pharmacologist with molecular biology and cell biology experience, has worked for many years in hospital based research and for the pharmaceutical industry. Joseph is a consultant on regulatory matters, using his experience with the pharmaceutical industry Joseph was part of the JTSMA Research Committee and their first Honorary Director of Research as well as a past Trustee. Joseph supports the Paediatric Task Force for the European Organisation for Rare Disorders (EURORDIS). Joseph has continued to support organizations working in rare neuromuscular diseases often providing pro bono regulatory support and advice.
The Jennifer Trust for Spinal Muscular Atrophy is the only national charity in the UK dedicated both to supporting people affected by SMA, and investing in essential research into causes, treatments, and eventually a cure for the disease.
The condition affects people of all ages, race or background. The Jennifer Trust aims to provide support to any child, adult or family affected by SMA(www.jtsma.org.uk)
Consultant Pediatric Neurologist - University Medical Center Freiburg
Dr. Jan Kirschner is coordinator of the Clinical Trial Coordination Centre (CTCC) based in Freiburg, Germany. Jan has been joint coordinator of the German MD-NET since 2008 and was responsible for the coordination of a large multi-centre, placebo-controlled MD-NET trial in Duchenne muscular dystrophy.
Research Associate - Newcastle University
Pauline McCormack works as a Research Associate with the Policy, Ethics and Life Sciences group at Newcastle University. Pauline is looking at the social and ethical issues associated with the treatment and care of neuromuscular disorders.
Patient Advocate - Parent Project Muscular Dystrophy
Patrick Moeschen is a 38-year-old, full-time music teacher living in Salem, NH. Mr. Moeschen was diagnosed with Becker Muscular Dystrophy at age 12. His very serious medical condition never held him back from following one of his passions and primary interest: music. A drummer since age 10, Mr. Moeschen decided to pursue a career in music, receiving a Bachelor in Music Education from U.Mass Lowell in 1995 (Magna Cum Laude). After completing college, Mr. Moeschen took an appointment at the Woodbury Middle School in Salem, NH teaching middle school band, music appreciation and jazz ensemble. In addition to his teaching responsibilities, Mr. Moeschen conducts private music lessons in his home studio.
Director of The Dubowitz Neuromuscular Centre - University College London
Francesco Muntoni (Professor in Pediatric Neurology, FRCPCH, FMedSci): Director of the Unit with oversight of both clinical and research activities. Key National and International contacts; 230 publications.
Board of Directors - Association Française contre les Myopathies - AFM
Marie-Christine is mother of a girl affected by SMA. She is a member of AFM Board of Directors, AFM international committee and TREAT-NMD Project Ethics Council.
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.
Professor of Theory and Ethics in the Biosciences - University of Lübeck
Christoph is experienced in the field of bioethics and is a member of the TREAT-NMD Project Ethics Council.
International Scientific Affairs - Association Française contre les Myopathies - AFM
Dr. Francoise Rouault joined the scientific direction of the AFM in October 2009 as International Scientific Affairs Manager.
Associate Professor, Astrid Lindgrens Barnsjukhus - Karolinska Institute
Thomas Sejersen (MD, PhD): Head of clinical and research team for neuromuscular disorders in childhood. He is involved in ENMC workshops on DMD and desmin-related myopathies.
Chair, United Parent Project Muscular Dystrophy - UPPMD - United Duchenne Parent Project
Elizabeth is the president of Dutch Duchenne Parent Project and the chair of United Parent Projects Muscular Dystrophy (UPPMD).
Bioethicist - Newcastle University
Dr Simon Woods is a bioethicist at the Policy, Ethics and Life Sciences Research Centre (PEALS). He is a member of a number of research and clinical ethics committees and has an active international research profile in medical ethics and ethics related to developments in the life sciences.