The MWV organisers wanted to link a good cause to their event. Therefore, 25 percent of all MWV registration fees go to the ALS Netherlands foundation. The organisation became aware of an initiative of Venray resident Norbert Hulleman, and immediately embraced his idea. Read Norbert’s story below. Or rather, his father’s story.

“In the name of my father, the fight goes on. On Thursday, 7 August 2014, my father Martin Hulleman started, what he called, his next trip at the age of just 71. On his deathbed he told me: “Nor, make sure the battle continues.” ‘Continue my fight’ is ALS Netherlands’ campaign motto in its fight against the disease. My father put a heavy burden on my shoulders. With a very soft voice, because that’s what this horrible disease does, he said: “Nor, make sure that others do not have to go through what I have been through.” That hit me hard, but I promised my dad that I would continue his fight. And I am still doing that.

In the years of his illness and after his death, my family and I have visited many meetings, like the ALS world day. I have spoken to many ALS patients and the people around them. We heard that many people don’t dare to ask ALS patients directly how they are doing. We had already noticed the same. That gave me the idea to bring people together in an accessible and open way to share information on what the disease means. The national neighbours day would be a good stepping stone for that. Together with the ALS Netherlands foundation, we have meanwhile set up the national barbecue event.

I am always looking for opportunities to raise money for the ALS Netherlands foundation. I try to get in touch with other initiatives, like the Multiple-day Walking Event Venray. I have been so surprised again to find out that I am not carrying that burden alone but that people around me are keen to help. That feels very special. I am more than happy that the MWV foundation will also help me to fulfill the promise to my father.”