The second edition of Stairs against Huntington is a great success. About two hundred cyclists have signed up for a tour near Westzaan. More than 21,000 euros has been raised today. Money needed for more research into the disease. Huntington’s is a hereditary brain disorder in which the body increasingly abandons you.
Westzaner Edwin Stolp is 53 years old and has had Huntington’s disease since 2009. At first glance you don’t see anything about him, but that’s an appearance. “I very quickly get overstimulated and out of my mind because it no longer functions properly in my head.”
A day like this with hundreds of people all wanting to know how he is, is actually a torment. “I will be completely exhausted in the coming days. I already know that,” he says. But despite this, he wouldn’t want to miss this event for anything. Because it is so important that attention is paid to the disease. “We have to take it out of the taboo. We have to talk about it because a lot of people probably have it and don’t know about it because they don’t get tested.”
He himself is busy day and night to bring Huntington to the attention. Arjan Jonker van Trappen against Huntington organized this sponsor day with many volunteers. “Here in the Zaan region we have put the disease on the map and a lot of people know what it means. But there is still a lot to gain outside of that.”
hereditary
For Edwin it is important that the disease is combated, especially because it is hereditary. He is very concerned about his two children. “When we started a family, I didn’t know I had the disease. It could very well be that one of my children, or even both, have it.”
Edwin also participates in the tour himself. He cycles no less than 110 kilometers. “I feel good on the bike. Only then I don’t feel sick,” he says, “because even walking is bad for me.”