EXECUTIVE COMMITTEE

The Executive Committee consist of representatives from the member organisations that support ENMC on an annual basis. The Executive Committee meets twice a year to decide on the selection of the workshop applications and to make strategic decisions for future ENMC activities. The Chair (and vice-Chair) of the ENMC Executive Committee rotates every two years.

The Chair of the ENMC Executive Committee:

Since 2009, Dr Arpad von Moers is member of the Executive Committee (EC) of the ENMC as representative of the “Deutsche Gesellschaft für Muskelkranke“ (DGM).

Dr von Moers is pediatrician and serves as medical director of DRK Kliniken Berlin, Germany. He is head of the Department of Pediatric and Adolescent Medicine since 2005. Dr von Moers is co-director of the nationwide child abuse and neglect helpline for medical professionals and he is head of the Berliner Transitions Program, by now a nationwide applicable transition platform.

                                                                                   

“It is a pleasure to be part of the stimulating and enriching work of the ENMC. The international workshops  provided essential contributions to clinical and basic research and standards of care in numerous neuromuscular diseases. Nowadays ENMC is a powerful representative of patients in the neuromuscular community, which has been demonstrated by the “Milan Workshop” dealing with Shared Decision Making.”

Our current members are:

Dr K. Adcock, has been Director of Research and Innovation at Muscular Dystrophy UK (MD-UK) since 2018. Kate has a PhD in Neuroscience and spent time as a post-doctoral assistant in Switzerland before starting to work in research funding in 2005. Her key focus is delivering the charity’s research strategy as well as building new partnerships with funding bodies and other UK and international organisations.

Dr A. Ambrosini represents Fondazione Telethon Italy in the ENMC Executive Committee. Anna is Chief Scientific Officer for AriSLA, a Foundation dedicated to support research on Amyotrophic Lateral Sclerosis which involves Telethon, the main Italian patient organisation, together with other partners. She is responsible for developing clinical research programmes in the field of inherited neuromuscular diseases and is member of the TREAT-NMD Global Registry Oversight Committee and Vice-President of the Italian TREAT-NMD Registry. Anna has a PhD in pharmacology.

Dr S. van den Berge (Prinses Beatrix fonds, The Netherlands) is senior research coordinator at the Prinses Beatrix Spierfonds, the Dutch neuromuscular foundation. She has worked there since 2011, coordinating different grant rounds and a talent program. She is also actively involved in patient participation and communication regarding research. Simone has a PhD in neuroscience. As a member of the ENMC Executive Committee, Simone hopes to contribute to the wonderful international network of researchers and other stakeholders that has been built. Things in the neuromuscular field are changing rapidly and with multiple new therapies in the pipeline, collaboration is more important than ever.

Dr A. Méjat has been a member of the Executive Committee of ENMC since November 2015. He is a member of the Board of Directors at AFM-Téléthon (the French neuromuscular disease association), CECS Association (I-Stem – Stem cells research center, Evry, France) and GenAtlantic Association (Atlantic Gene Therapies, Nantes, France). Alexander was a researcher (PhD) at the NeuroMyoGene Institute (INMG, http://www.inmg.fr – Lyon, France) where he led a research team on Emery-Dreyfuss muscular dystrophy. Alexander represents the patients’ voice in the Executive Committee since he himself is affected by Bethlem Myopathy.

Dr I. Meijer is a member of the Board of Spierziekten Nederland, the Dutch patient organisation of people with neuromuscular diseases. She has a PhD in biomedicine from the University of Leiden, and worked subsequently in a biotech company (Celltech), in health research policy (Gezondheidsraad-RGO) and in European science innovation and technology policy evaluation (Technopolis Group) before returning to academia. As a researcher at the Center for Science and Technology Studies (CWTS) her focus is on the societal use of research, investigating researcher and stakeholder visions and values.

Dr J. Rahbek is a specialist in neuromuscular rehabilitation and the Chief Medical Officer and Director of the Danish National Rehabilitation Centre for Neuromuscular Diseases. He represents Muskelsvindfonden, the Danish patient organisation for NMD where he is chairman of the scientific committee, ethical committee and international relations committee. He has been a member of ENMCs’ Governing Board since 1993 and is a member of the TREAT-NMD Executive Committee.

Dr R. Willmann has represented the Swiss Foundation for Research on Muscle Disease (FSRMM) at ENMC since 2012. She has a PhD in biochemistry and was an active researcher in the field of muscle physiology and neuromuscular junction formation. In 2007, she joined the TREAT-NMD network and worked on the realisation and publication of standards and guidelines for preclinical studies in animal models of neuromuscular diseases. Her present interests are the implementation of quality in the preclinical research for neuromuscular diseases and the translation to therapeutic treatments.

The Executive Committee receives no compensation. Expenses (such as travel to the bi-annual Executive Committee meetings in Amsterdam and accommodation costs) shall be covered by the patient organisations themselves.