TREAT-NMD Executive Committee
The TREAT-NMD Executive Committee, made up of 9 academic representatives and 4 patient representatives, took over governance of the network in 2012. The members of the Executive Committee were elected from the TREAT-NMD task force and from member patient organisations. The members of the committee then elected their Chair and Vice-Chair by majority vote.
The TREAT-NMD task force, intially set up to oversee the transition from the network’s EU funding status, was asked to nominate and vote for the scientific contingent of the committee. Over 120 patient organisations from 51 different countries were involved in the voting process to determine the three patient organisation representatives that complete the committee.
The Executive Committee is responsible for providing overall policy and strategic direction to the TREAT-NMD Alliance, oversees activities and progress, and delegates responsibility for day-to-day operations to the representatives of the various activity groups. The Executive Committee receives no compensation other than reasonable expenses. Members of the Executive Committee are elected as private individuals and not representatives of their home institution or organisation.
Main roles and responsibilities
- Represent TREAT-NMD at conferences and events
- Promote TREAT-NMD by including slides in presentations at appropriate events
- Deliver areas of the TREAT-NMD Action Plan Commitment
- Provide advice, opinion and expertise on issues raised at monthly meetings.
- Suggest ideas about the work of TREAT-NMD
The TREAT-NMD Alliance is governed by the charter which can be found here.
Chair of Executive Committee
Dr. Jan Kirschner is coordinator of the TREAT-NMD Clinical Trial Coordination Centre (CTCC) based in Freiburg, Germany. Jan has been joint coordinator of the German network for neuromuscular disorders MD-NET …Germany
Since Fabiola’s adopted son was diagnosed with Facioscapulohumeral Muscular Dystrophy in 2005, Fabiola became deeply involved in the world of neuromuscular diseases. In Italy, Fabiola has been an active member …Italy
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 …United States of America
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 …Belgium
Eugenio Mercuri Md PhD (Associate Professor in Pediatric Neurology): areas of expertise: congenital muscular dystrophy, outcome measures and assessment tools in neuromuscular disorders.Italy
Yuriko was diagnosed with GNE Myopathy in 2002 and founded PADM, the Patients Association for Distal Myopathy in 2008. Japanese scientist Dr. Ichizo Nishino proved the effective material for GNE …Japan
Marie-Christine is the 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. She is also …France
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).Sweden
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 …United Kingdom
Elizabeth Vroom is founder and president of the Duchenne Parent Project Netherlands since 1995 and Chair and co-founder of the World Duchenne Organisation (UPPMD). She is the mother of an …Netherlands