Unknown is unloved

Research into rare cancer is urgently needed, but difficult to fund. Donations are often crucial fort he future prospects of patients. Such as the donation from Leroy van Steenis for research into two rare types of cancer.Out of sight, out of mind The donor: Leroy van Steenis Relation to Antoni van Leeuwenhoek: Imagine this: first, your father-in-law gets diagnosed with breast cancer, then it turns out your mother-in-law is also affected by a rare type of cancer: laryngeal cancer. This happened to Leroy van Steenis. To make a difference for his in-laws, he decided to raise money for research into these rare cancers.“My wife Fabienne’s parents are both sick, it’s very sad. My father-in-law has had breast cancer since 2019 and earlier this year, my mother-in-law was diagnosed with laryngeal cancer, a currently incurable disease. I so wanted to do something for them. Then my father suggested we cycle the pilgrimage route to Santiago de Compostela together and link it to a fundraising effort for rare cancer research. It’s fantastic to do this with my father, but it’s also bittersweet because of the reason for the journey. Carolien Schröder, researcher and treating physician of my father-in-law, referred us to the Antoni van Leeuwenhoek Foundation. There we learned that research is also being done into my mother-in-law’s disease. We decided to donate half of our proceeds to research into men with breast cancer and the other half to research into small-cell neuroendocrine carcinoma. We started a fundraiser on www.actievooravlfoundation.nl, and donations also came in via social media. Omroep Zeeland followed us from the start. The support of so many people motivated me greatly. My father cycled with me until Paris, then I was alone. The bike ride was tough and emotional. I experienced so many beautiful moments and met so many wonderful people. Recently, we handed over a cheque for more than 10,600 euros to Antoni van Leeuwenhoek, and we hope to raise even more. Donations are still welcome. Fortunately, my in-laws are doing relatively well now. They find our fundraising effort very touching. That makes me happy.

“It’s wonderful that people raise money for our research” The medical researchers: Medical oncologists Margot Tesselaar (r) and Carolien Schröder (l). Research areas: Schröder researches breast cancer in men, Tesselaar researches neuroendocrine carcinomas, a rare, aggressive form of cancer.Schröder: “Breast cancer is so rare in men that they are almost by definition excluded from studies on, for example, new medications. Their long-term prospects are therefore worse than those for women with breast cancer. And the disease is usually detected late in men because there’s little awareness.”Tesselaar: The pharmaceutical industry is less interested in research on rare diseases because clinical studies are expensive and the target group for medication is small. I notice this in my research into neuroendocrine carcinomas. This makes it hard to find funding, very frustrating. So it’s wonderful that there are people like Leroy and his family who go to great lengths to raise money for our research. Cycling all the way to Santiago de Compostela is something. I’m exhausted just cycling to work.”Schröder: “It’s very special. We didn’t ask Leroy to do anything, it was a complete surprise for us. I also hope his effort brings more attention to the rare types of cancer we research. Out of sight, out of mind.”Tesselaar: “We talked with Leroy and his wife and explained our research. It’s hard to say precisely how the raised funds will be used, but they’ll be very useful. We largely depend on donations and grants, so every bit helps.”