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:

Dr E. Sterrenburg, is the current Chair of the ENMC Executive Committee. She holds a PhD in molecular biology and was an active researcher in the field of neuromuscular disorders. She is now manager of policy and research at the Prinses Beatrix Spierfonds. The Prinses Beatrix Spierfonds is a Dutch charity dedicated to curing all neuromuscular diseases.

“We promote and fund research into better treatments and cures. Since this is often a long process we also try to improve daily care and the quality of life for people with neuromuscular disorders.”

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 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 A. von Moers is the vice Chair of the ENMC Executive Committee. He is member of the board of Deutsche Gesellschaft für Muskelkranke (DGM). He is a pediatrician and he is specialised in child neurology. He has worked as a clinician in the field of neuromuscular disorders for more than 25 years. He was involved in the Networks Care NMD, MD-NET, and in clinical trials in Duchenne muscular dystrophy.

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.