Harrie Kampinga, researcher at the UMCG in Groningen, collects beer caps. Not because he is such a beer cap fan now, but because he wants to raise money for Huntington patient Jeroen. “With every beer I think of Jeroen.”
Harrie Kampinga and Jeroen have known each other for about eight years. Kampinga was impressed by his patient, who often talks candidly about his illness. For those who do not know Huntington’s disease: it is an inherited condition in which nerve cells in the brain slowly deteriorate. Kampinga: “You first get Parkinson’s, then ALS, which means you can no longer use your muscles properly and finally Alzheimer’s. You become very sad about each disease, let alone get all three. ”
F-side FC Groningen
Jeroen is now in the second stage. He has a lot of trouble talking, which is why Kampina talks about the beer cap action. “But it is Jeroen’s action,” Kampinga emphasizes. “I support it.”
The professor of cell biology in Groningen regularly takes Jeroen to his lectures. “At the beginning of the lectures, he sometimes talks about his illness, so that students are not only concerned with molecules.”
For example, Jeroen talks about the consequences. That he is a FC Groningen fan, and was a Z-side hooligan. He can now no longer visit the matches because he suffers from mood swings. He still went to the cup final FC Groningen – PEC Zwolle in de Kuip in 2015, but was not admitted. Because he walked rather staggered, he was seen as someone who was drunk. Kampinga: “The guards cannot do anything about that, but it is very sad.”
His marriage has also ended. “He had an incredibly sweet wife, but you can hardly live with someone who has Huntington.” When he talks about that, the chills run over Kampinga. “But not only with me, students sometimes come to me almost crying afterwards.”
Jeroen always ends his story in a positive way: students can do something. “He always asks if the students want to help him save beer caps. He then hands it in to the hardware store and the money he gets for it goes to the Campaign Team Huntington foundation. In this way, more research can be done into the disease. ” There is not yet a medicine to stop the disease.
Need help 24/7
Huntington’s disease is the most common rare disease in the Netherlands. Estimates vary, Kampinga says, but about 1 in 10,000 Dutch people are patients. That means that between 1,700 and 2,000 people currently have the disease. “But you also have gene carriers; those are people who do not yet have the disease. Those numbers are estimated at around 6,000-10,000. The moment you get it, usually between the 30-50th year of life, you regress fairly quickly. You need help and guidance 24/7. ”
But not only the students, Kampinga also saves beer caps. Especially because of the symbolic value: “Every time I open a beer, I think of Jeroen. He can’t do this anymore. ” This is due to the lack of coordination, which you have to deal with at the beginning of the disease. “The focus of the corkscrew is already very complicated. And then you also have to put in power. That no longer works. ”
Kampinga would like to maintain the symbolism of the campaign. If you also want to collect beer caps (during these warm days), you can. You can email the professor at his personal address: [email protected]. “Then I will make sure that the person gets more information.”
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