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, initially 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.
Dr. Jim Dowling is a clinician-scientist focused on gene discovery and therapy development for childhood muscle diseases. He is a staff clinician and senior scientist at the Hospital for Sick …Canada
Prof. Dr. Annemieke Aartsma-Rus is a professor of Translational Genetics at the Department of Human Genetics of the Leiden University Medical Center.Netherlands
Member of the TREAT-NMD Executive Committee
Lindsay Alfano works in the clinical therapies Outpatient OT/PT department, as well as the Research Institute's Center for Gene Therapy. Her interests are focused on developing alternative programs/models of care for children with developmental disabilities and researching outcome measures and exercise in children and adults with neuromuscular disease.United States of America
Anna Ambrosini, PhD, is coordinator of the activities of the Italian TREAT-NMD partner Fondazione Telethon (FTELE). She works by the Telethon Scientific Office in Milan where she is responsible for …Italy
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
Gillian Butler-Browne began working on muscle at the Pasteur Institute in 1978. She worked on characterizing the expression profile of different myosin isoforms during both human and rodent development and …France
Annamaria is a pharmacologist specialized in pre-clinical in vivo and ex vivo studies of inherited and acquired neuromuscular disorders. In this general frame, she has a long lasting experience in …Italy
Dr. Levy is the Scientific Director at Coalition to Cure Calpain 3 (C3) where she facilitates research into finding treatments for LGMDR1 by managing the grant program and by interacting …United States of America
Linda Lowes, PT, PhD is a principal investigator in the Center for Gene Therapy at the Abigail Wexner Research Institute of Nationwide Children’s Hospital and an Associate Professor at The …United States of America
Debra Miller is Founder and CEO of CureDuchenne. She and her husband started the organization in 2003 after their only son, Hawken, was diagnosed with Duchenne.United States of America
Marie-Christine is the mother of a girl affected by SMA. She is a member of AFM TELETHON Board of Directors also member of the board of SMA Europe (association of …France
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
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 …France