Charity ALS Nederland

The MWV organisers wanted to link a good cause to their event. Therefore, 12,5% 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.”

Norbert Hulleman.

Here is the story of a volunteer who has experienced ALS up close.

I had no doubt whether I would be available as a volunteer for the Meerdaags Wandelevenement Venray! For me two important things from my life are coming together here: walking and the ALS charity.

In the same year that Norbert Hulleman lost his father to ALS, I lost my mother to the same severe disease. A strong, active 71-year-old woman had to accept that within a few months after the diagnosis, she had become wheelchair-bound, had increasing difficulty talking and needed help from someone else all the time. And she really loved walking! The plan was another pilgrimage to Santiago, but unfortunately it has not happened. It became another pilgrimage… But the limitations could not undermine her mental strength. She remained strong, could still enjoy the little things and gather other people around her. This was also something necessary, as she wanted to stay in her own environment in Velden as long as possible.

Although it has been a very sad period and I didn’t want to lose my mother yet, I look back with a positive feeling as well. This special period made me, as a daughter and caregiver, realise how helpful people can and want to be. Asking for help is giving the other the opportunity to be meaningful to you… In this period that became a reality several times a day.

But I also experienced that a lot of things had to be arranged, sorted out, looked after and supervised. I didn’t hate doing it, but it took so much time! Time I would rather have spent otherwise. Shouldn’t it be possible to do it in a different way?

After my mother’s death, I thought about this and decided that I wanted to use my experience to support and guide other caregivers. This is what I do nowadays, as an independent caregiver agent. I try to ensure that the valuable time can be used to make beautiful memories together. I can take over what the caregiver experiences as a burden, like arranging, sorting out, calling institutions, etc. This way I create clarity, overview and tranquillity in a mostly hectic period when it comes to a severe disease like ALS.

So ALS has got a special place in my life and walking is a wonderful activity that still brings me close to my mother. That is why I am now a volunteer in the route committee. We do our utmost to put together the most beautiful routes for the participants in the lovely surroundings of Venray. Hopefully this will lead to a nice number of participants, so a lot of money will be raised for the Stichting ALS Nederland. So, hopefully, the disease can be stopped at some point in the future.

I wish you a lot of walking pleasure! If you would like to know more about what I can do for you as a caregiver agent, feel free to take a look at my website.

Kind regards,
Mirjam Hoogland-Verspaij