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.

Vice-Chair Eric Hoffman was scheduled to take over as Chair of the Executive Committee of the TREAT-NMD Alliance from Annemieke Aartsma-Rus in December 2015 during the TREAT-NMD International Conference. However, Eric has recently taken a year leave of absence from his academic position to aid drug development and clinical trial efforts in the private sector. To avoid perceived or real conflict of interest, Eric voluntarily stepped down as Vice Chair of the TREAT-NMD Executive Committee, and thus will not assume the Chair position in December. Eric will remain a member of the TREAT-NMD Executive Committee.

The TREAT-NMD Charter did not specify whether individuals employed by industry can be Executive Committee members. The Executive Committee has discussed this matter and has voted on it. The outcome is that it is acceptable to have individuals employed by industry as members of the Executive Committee; however, they are precluded from taking (Vice)-Chair positions while being employed by industry.

In light of these developments, a new Vice-Chair was required. We are pleased to announce that Kevin Flanigan has stepped up as the new Vice-Chair. He will take over as Chair from Annemieke in October 2016, when Filippo Buccella will become the new Vice-Chair.

The TREAT-NMD Alliance is governed by the charter which can be found here.

Kevin Flanigan Kevin Flanigan - Chair of TREAT-NMD Executive Committee

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.

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Janbernd Kirschner Janbernd Kirschner

Consultant Pediatric Neurologist - University Medical Center Freiburg

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 (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. With the CTCC team in Freiburg Jan has established the Care and Trial Site Registry (CTSR) containing feasibility information about neuromuscular centres worldwide.



 

Annemieke Aartsma-Rus Annemieke Aartsma-Rus

Professor - Leiden University Medical Center

Dr. Annemieke Aartsma-Rus played an important role in the development of the antisense mediated exon skipping therapy for Duchenne muscular dystrophy during her PhD research (2000-2004), which was supervised by Dr. Judith van Deutekom, Dr. Johan den Dunnen and Prof. Dr. Gert-Jan van Ommen at the Leiden University Medical Center, Department of Human Genetics (the Netherlands). She successfully defended her thesis titled “Development of an antisense-mediated exon skipping therapy for Duchenne Muscular Dystrophy – Making sense out of nonsense” on February 10th 2005. Since September 2004 she continued this research as a post doc under supervision of Dr. Judith van Deutekom.

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Nathalie Goemans Nathalie Goemans

M.D - UZ Leuven

Nathalie Goemans, MD, PhD, is a paediatrician and child neurologist, with certification in rehabilitation medicine. She is head of clinic within the department of Pediatric Neurology and head of the Neuromuscular Reference Centre for Children at the University Hospitals Leuven. She has an academic position at the University of Leuven, Belgium. She is vice chair of the TGDOC within TREAT- NMD.

Nathalie has a particular interest in the multidisciplinary aspects and the dissemination of standards of care in neuromuscular disorders. Research activities involve therapy development and development of outcome measures to assess interventions in these diseases.

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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.

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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.


 

Yuriko Oda Yuriko Oda

President of Nonprofit-organization PADM - Patient association for distal myopathies

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 Myopathy, however there were no pharmaceutical companies interested in further development of a medicine. PADM repeatedly petitioned against this finally reversing this decision in Japan in 2010 followed by the US and other countries.

Since April 2008, PADM has been campaigning for distal myopathy to be recognised as a designated rare disease in Japan. After collecting over 2 million signatures they achieved their goal in 2015.

PADM wishes to overcome difficulties and disabilities not only for people with distal myopathies, but for all kinds of patients. They have recently started to build a new system for barrier-free map in 2015, when they received the grand prize in Google Impact Challenge in Japan.

 

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.

 

Elizabeth Vroom Elizabeth Vroom

Chair, World Duchenne Organisation (UPPMD)

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 adult son with Duchenne Muscular Dystrophy.

Duchenne Parent Project Netherlands funded more than 130 research projects towards the development of viable treatments in Academia and industry around the globe. The organisation is also involved the development of exoskeletons and other technologies for Duchenne Muscular Dystrophy. The World Duchenne Organisation (UPPMD) represents the global community, plays a role in the dissemination of Standards of Care and initiated the World Duchenne Awareness Day.

 

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).


 

Fabiola Bertinotti Fabiola Bertinotti

Vice-president of FSHD Europe

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 of patient’s association Unione Lotta alle Distrofia Muscolare (UILDM), and has recently joined Coordinamento Associazioni Neuromusculari (CAMN).

At an international level, Fabiola is one of the founding members of FSHD EUROPE, a federation of local FSHD and other Muscular Dystrophy organizations whose main objective is to represent the interests of these European organizations in relation to their various international stakeholders. After serving for three years as president, during which the association expanded its reach to include various European FSHD and other Muscular Dystrophy local associations, Fabiola has been appointed Vice-president with specific focus on patient’s interests and TREAT-NMD. Fabiola is passionate about open science and co-creation and has enrolled into the EURORDIS Summer School program.

 

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.


 

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.


 
 
12 Apr 2017