Project MinE international kick-off

16 September 2014

ALS associations and research centres of fourteen countries join forces in the largest genetic research of ALS worldwide: Project MinE. Representatives of the associations and centres met in Amsterdam on the 8th of September for an international kick-off meeting.

Project MinE

Amyotrophic Lateral Sclerosis (ALS) almost certainly has a genetic basis. To obtain sufficient power to identify all genetic variants in ALS a total of 15,000 ALS DNA profiles and 7,500 control DNA profiles (genomes) need to be sequenced. This requires an international approach. Genetic research into the origins of ALS on this scale is unprecedented, but is needed if we are to achieve our commitment of making a revolutionary breakthrough.

Project MinE has been initiated by two Dutch ALS patients and entrepreneurs, Bernard Muller and Robbert Jan Stuit, and professor Leonard van den Berg of the ALS Centre Netherlands, in cooperation with the Dutch ALS foundation. Leonard van den Berg explains the current stage of the project: “Currently, we have sequenced 2,000 DNA profiles. To sequence 15,000 DNA profiles of ALS patients, ALS research centres worldwide need to join forces. Project MinE recently started in the UK, Belgium, Portugal, Spain and Ireland. And more ALS research centres worldwide are about to join us”.

International consortium

The ALS research centres from the fourteen countries represented at the kick-off meeting decided to form a consortium for this largest whole genome sequencing project ever. The sequencing of 22,500 genomes will generate large amounts of data. In terms of data storage, sharing of data, ICT infrastructure and data analysis, the scientists face a challenge. And they are confident that they will succeed and create a major breakthrough in ALS research.

Collaboration in fundraising

Each ALS research centre is supported by their national ALS/MND foundation. Through international collaboration in fundraising for Project MinE they want to support the scientific consortium in the execution of the project.

The international Project MinE kick-off meeting was funded by the Amsterdam City Swim. This yearly swimming event in the canals of Amsterdam is an excellent example of successful fundraising. It has increased ALS awareness in the Netherlands and raised nearly two million euro’s for scientific research this year. Chairman Marc ter Haar of the Amsterdam City Swim foundation explained: “This meeting completely fits with our aim to bring the City Swim to other leading global cities, like New York, to raise awareness of ALS and to cooperate with ALS foundations worldwide”.

Please visit for a list of participating ALS foundations and ALS centres.


For information about this groundbreaking genetic research project, please visit If you want to participate, please contact the project coordinator at the ALS Centre Netherlands, Barbara Thuss ( Project MinE is open for all research centers/institutes around the world that could contribute DNA samples of ALS patients and for their supporting ALS foundations.