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Netherlands ALS Centre & Netherlands ALS Foundation

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.

Meet our ambassadors

In The Netherlands, we have several ambassadors for Project MinE.

  • Bernard Muller

    Emprendedor, paciente de ELA

    Bernard Muller

    Emprendedor, paciente de ELA

    In June of 2010, I was diagnosed with ALS. Since then I am passionately driving forces on our way to find a cure, with the help of my family, friends, business partners, fellow patients, advocates and especially Robbert Jan. I do whatever I can to connect the dots and find a way to treat this ruthless disease, because I strongly believe “One man can and will find a way, why not be that man…”.

  • Robbert Jan Stuit

    Emprendedor, paciente de ELA

    Robbert Jan Stuit

    Emprendedor, paciente de ELA

    In May of 2011, I was diagnosed with ALS. From that moment on, I decided to fight ALS with everything I have. I am married to Hiske and am the proud father of Alec and Samuel. My sons are a huge source of inspiration for me to fight this disease even harder. After I met Bernard, a fellow ALS patient, we decided to work together to try and speed up the search for a treatment or even a cure for ALS. That’s why we started project MinE, the largest ever genetic research study into the cause of ALS.

  • Garmt van Soest (†)

    Consultant, ALS patient

    Garmt van Soest (†)

    Consultant, ALS patient

    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.

    http://alsdantoch.com/

  • Eric Arnold (†)

    Mountaineer

    Eric Arnold (†)

    Mountaineer

    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.

    slider-eric-en

  • Meindert van Buuren jr.

    Meindert van Buuren jr.

    Meindert van Buuren jr. is a professional racer. In the past years he has been succesful in the Renault World Series. In 2016 he will race in the Renault Sport Series R.S.01. Project MinE shares a passion for speed!

May we introduce our experts?

Project MinE research in The Netherlands is performed at the Netherlands ALS Centre in the University Medical Centre Utrecht.

  • Leonard van den Berg

    Catedrático de Neurología, Director del Centro Neerlandés de ELA

    Leonard van den Berg

    Catedrático de Neurología, Director del Centro Neerlandés de ELA

    As the director of the Netherlands ALS Centre and Professor of Experimental Neurology at the University Medical Centre (UMC) Utrecht, I am searching for the best possible treatment for people with ALS. I encourage international cooperation in the field of ALS through my position as President of the European Network for the Cure for ALS (ENCALS). Furthermore, our centre coordinates several ALS research projects with European partners.

  • Jan Veldink

    Catedrático de Neurología

    Jan Veldink

    Catedrático de Neurología

      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.

    Our partners

    In The Netherlands fundraising for Project MinE is led by the Netherlands ALS Foundation.

    Nuestro sincero agradecimiento a todos los que han contribuido a Project MinE

    • A.M. Pack-Appel
      € 15
       • Países Bajos
    • Anonymous
      € 15
       • Países Bajos
    • Jan Zuring
      € 40
       • Países Bajos
    • Steven Andrew Williams
      € 100
       • Países Bajos
    • Anonymous
      € 10
       • Países Bajos
    • Anonymous
      € 75
       • Países Bajos
    • Jan Zuring
      € 310
       • Países Bajos
    • Anonymous
      € 50
       • Países Bajos
    • Leo Zegers
      € 1 264
       • Países Bajos
    • Guntram W. Ickenstein
      € 50
       • Países Bajos
    • Jay Foggin
      € 100
       • Países Bajos
    • Anonymous
      € 75
       • Países Bajos
    • lydia van meeuwen
      € 250
       • Países Bajos
    • Anonymous
      € 75
       • Países Bajos
    • Anonymous
      € 30
       • Países Bajos
    • Steven Andrew Williams
      € 75
       • Países Bajos
    • Anonymous
      € 270
       • Países Bajos
    • Eddy Frizo
      € 100
       • Países Bajos
    • Anonymous
      € 300
       • Países Bajos
    • Dorine Maris
      € 10
       • Países Bajos
    • Anonymous
      € 25
       • Países Bajos
    • Rotaryclub Roelofarendsveen - Lezing Eric Arnold (r.i.p.) maart 2016
      € 300
       • Países Bajos
    • Birgit Ingen Housz
      € 50
       • Países Bajos
    • Mary Jayne White
      € 20
       • Países Bajos
    • Marten van Wezel
      € 50
       • Países Bajos
    • Joyce Jansen
      € 75
       • Países Bajos
    • Iris Boersma
      € 25
       • Países Bajos
    • Liz Vader
      € 75
       • Países Bajos
    • Anonymous
      € 75
       • Países Bajos
    • Steunpunt KOEL
      € 250
       • Países Bajos