On Monday September 8th 2014 ALS associations and research centres of fourteen countries came together in Amsterdam, The Netherlands, to discuss and extend international collaboration in ALS research generally and Project MinE specifically. Main topics were fundraising for ALS research and the formation of an official Project MinE consortium.

Group picture of the Project MinE kick off meeting

Next to the initiators of Project MinE, Bernard Muller and Robbert Jan Stuit, the ALS Centre Netherlands (among others Prof. Leonard van den Berg and Jan Veldink), the Dutch ALS Foundation (director Gorrit-Jan Blonk), and board members of the Amsterdam City Swim, the following representatives were present:

• Ian Blair, Australia (Macquarie University Sydney)
• Evy Reviers, Belgium (ALS Liga)
• Kristof Nijs, Belgium (ALS Liga)
• Philip van Damme, Belgium (KU Leuven, VIB Leuven)
• Philippe Corcia, France (CHRU de Tours – Hôpital Bretonneau)
• Alice Vajda, Ireland (Trinity College Dublin, Research Motor Neurone)
• Russell McLaughlin (Trinity College Dublin, Research Motor Neurone)
• Marc Gotkine, Israel (NM/EMG service and ALS/MND Clinic, Hebrew University – Hadassah Medical Center, Jerusalem)
• Neta Zach, Israel (Prize4Life Israel)
• Shay Rishoni, Israel (Prize4Life Israel)
• Stefania Guareschi, Italy (AriSLA)
• Vincenzo Silani, Italy (University of Milan, IRCCS)
• Graça Gaspar, Portugal (APELA)
• Susana Pinto, Portugal (IMM, University of Lisbon)
• Jesús Santos ‎Mora Pardina, Spain (ALS Unit, Hospital Carlos III, Madrid)
• Alberto Garcia Redondo, Spain (ALS Unit, 12 de Octubre University Hospital, Madrid)
• Carlos Donesteve, Spain (FUNDELA)
• Teresa Salas Campos, Spain (FUNDELA)
• Thomas Stucki, Switzerland (ALS Vereinigung Schweiz)
• Markus Weber, Switzerland (Kantonsspital St. Gallen)
• A. Nazlı Basak, Turkey (Bogazici University Istanbul)
• Ammar Al-Chalabi, UK (King’s MND Care and Research Centre, London)
• Brian Dickie, UK (MND Association)
• Karen Morisson, UK (University of Birmingham, Birmingham MND Care and Research Centre)
• Pamela Shaw, UK (University of Sheffield, SITRAN, Sheffield Care and Research Centre for MND)
• Winston Hide, UK (University of Sheffield, SITRAN, Sheffield Care and Research Centre for MND)
• Jonathan Glass, USA (Emory School of Medicine and Director of the Emory ALS Center)
• Garmt van Soest, inspirational ALS patient, The Netherlands

At the Amsterdam City Swim on 7 September

The international Project MinE symposium was funded by the Amsterdam City Swim. This yearly and successful swimming event in the canals of Amsterdam, which took place one day prior to the meeting, increases awareness and raises funds for ALS in The Netherlands. The representatives of the ALS associations and research centres were special guests at this event. The Amsterdam City Swim board hopes to expand its event to other countries as well and already announced that from 2015 on the City Swim will also take place in New York! Chairman Marc ter Haar explains: “This international symposium for Project MinE completely fits with our aim to bring the City Swim to leading global cities, like New York, to raise awareness of ALS and to cooperate with ALS foundations worldwide”.

Prof. Pamela Shaw and Prof. Winston Hide at the City Swim

Gorrit Jan Blonk, director of the Dutch ALS Foundation, emphasized the opportunities of international collaboration: “More thorough international collaboration can accelerate the research into the cause and treatment of ALS. By joining forces worldwide, we will be able to share knowledge and guarantee the best quality of ALS research”. Professor Leonard van den Berg of the ALS Centre Netherlands is proud of the international progress of, amongst others, Project MinE. He states: “To collect 15,000 DNA profiles of ALS patients, ALS research centres and ALS foundations worldwide need to join forces. Currently, we have 2,000 DNA profiles analysed with whole genome sequencing. Project MinE recently started in the UK, Belgium, Portugal, Spain and Ireland. And more ALS research centres worldwide are about to join us.”

To analyse 15,000 DNA profiles of ALS patients, ALS research centres and ALS foundations worldwide need to join forces!

Representatives from Spain at the City Swim (Prof. Jesus Santos Mora Pardina, Alberto Garcia Redondo, Carlos Donesteve and Teresa Salas Campos)

Prof. Van den Berg participated in the Amsterdam City Swim himself as well:

Prof. Leonard van den Berg and his friends after they swam 2 km in the canals of Amsterdam!

Have a look at the video of this first international Project MinE meeting.