Join the fight and help us discover the genetic basis of ALS. Start or support a local initiative to raise funds. Project MinE, make it yours!
La totalité des dons est utilisée pour l’analyse des profils ADN.
The Netherlands ALS Centre is located in the University Medical Center (UMC) Utrecht. The goals of the ALS Centre are to optimize and accelerate the diagnosis of ALS, to improve the quality of care and treatment that ALS patients receive, and to initiate, encourage, and facilitate research into the cause and a possible cure for ALS. The centre is headed by Professor Leonard van den Berg and works together closely with several ALS centres throughout Europe and the rest of the world.
Project MinE research in The Netherlands started officially in the third quarter of 2013. So far, already 2,000 Dutch DNA samples of ALS patients have been sequenced.
Funding to map the Dutch DNA profiles is raised by the Netherlands ALS Foundation and several other local initiatives which are organised throughout the year, such as the Amsterdam City Swim (swimming through the canals in Amsterdam), the Tour du ALS (cycling the Mont Ventoux in France), Cycle2themusic (spinning sessions with famous DJs), and many smaller campaigns such as charity dinners, cycling club sponsoring, car racing, etc.
In The Netherlands, we have several ambassadors for Project MinE.
In memoriam:
Mountaineer Eric Arnold conquered many peaks over 4000 meter in the Alps such as the Eiger, Matterhorn and Mont Blanc. Expanding his horizon, Eric started climbing in the Himalayas in 2002 and got within 250 meters of the top of the Mount Everest in 2012, where bad weather forced him to turn back. He attempted on another expedition to the Mount Everest in Spring 2014. This time he climbed also for Project MinE and the Dutch ALS Foundation. The climbing season was canceled after 16 Nepali guides were crushed to death by falling ice. Then, in 2015, came the earthquake that left 8,000 dead across Nepal.
April 5th 2016 he flew to Kathmandu for his 5th attempt. On May 20th he realized his dream by reaching the top of the Mount Everest!!! Sadly, while descending he perished at Camp IV as a result of altitude-related sickness. Eric was one among a very few Dutch climbers who succeeded in climbing the Mount Everest.
The analogy between conquering a mountain and conquering ALS was what motivated Eric. Both require many small steps, but the person that persists will reach his goal: the top of the Mount Everest or a cure for ALS. In his own way, Eric hoped to be able to contribute to ALS research and to raise awareness and funding as much as possible. He has been an inspirator for many and his death is a great loss.
In memoriam:
Garmt joined Accenture in 2010 as a Senior Manager in Strategy where he has been leading engagements in different industries, solving complex problems, advising on strategic direction setting and leading organizational transformation programs. Since his diagnosis with ALS his full-time job is to fight this disease with everything he and Accenture can muster.
Together with Bernard Muller and Robbert Jan Stuit he initiated Project MinE in 2013.
J’ai été diagnostiqué SLA en juin 2010. Depuis lors, j’ai tout mis en œuvre pour trouver un remède à cette maladie. Je suis déterminé à trouver une solution, avec l’aide de la famille, d’amis, de partenaires commerciaux, d’autres patients, et, en particulier, de Robbert Jan. Ma motivation repose sur toutes les personnes impliquées par cette terrible maladie, avec la devise “One man can and will find a way, why not be that man…”.
J’ai été diagnostiqué SLA en mai 2011. Dès cet instant, j’ai décidé de me battre comme un lion contre la SLA. Je suis marié à Hiske et, récemment, notre fils Alec est né. Une raison de plus pour moi à combattre encore plus vigoureusement la SLA. Suite à ma rencontre avec Bernard, également patient SLA, nous avons décidé d’essayer ensemble d’accélérer la recherche d’un traitement pour la SLA. C’est pour cette raison que nous avons démarré ‘Project MinE’, la plus importante recherche génétique jamais effectuée sur la cause de la SLA.
Project MinE research in The Netherlands is performed at the Netherlands ALS Centre in the University Medical Centre Utrecht.
En tant que directeur du Centre SLA des Pays-Bas et professeur en Neurologie Expérimentale du Centre Médical Universitaire d’Utrecht (UMC), je cherche le meilleur traitement pour les patients SLA. J’encourage la coopération internationale à partir de ma présidence du ‘European Network to find the Cure for ALS’ (ENCALS) et comme coordonnateur des projets de recherche européens dans le domaine de la SLA.
I am the head of the human neurogenetics unit at the UMC Utrecht with recent infrastructural investments (next generation sequencing and computational hardware (high-performance clustering computing)) and state of the art bioinformatics support. I have established a research line on ALS genetics, epidemiology and transcriptomics with a proven track record in both array-based and sequencing technology. In addition, I have established an international biobanking register and patient database specifically for ALS, which is essential to be able to carry out Project MinE.
In The Netherlands fundraising for Project MinE is led by the Netherlands ALS Foundation.
