The past two years have once again been marked by fighting, enjoying, and simply carrying on. We would like to share with you what has happened during this time.
Spring 2023 began with a huge milestone: on March 25th, we crossed the €100,000 donation mark. It is incredible how much support and involvement we continue to receive. Shortly after, Lex himself performed with his Beatles tribute band, The Beatlex, during the open day in Beemster – a very special and musical moment we will never forget.
Between hospital visits (MRI scans), life in our family kept moving. Sofie turned four and started her first day of school on May 22nd, 2023. In July, we celebrated our fifth wedding anniversary, and in October, little Emma turned one already – a cheerful, chatty, and fast-running toddler who completes our family and keeps us very busy.
Over the past two years, there have been many wonderful initiatives, such as the charity concert Toward Freedom in late October 2023, organized by Accordion Ensemble Opus 2. In 2024, new actions followed. A bottle deposit fundraiser at Albert Heijn in Amsterdam Noord raised €419.25. We appeared on NH Nieuws, which generated €577 in donations. It remains confronting to see how hard it is to gain broader support, even with national attention. But every contribution counts, and the support of everyone who does donate means the world to us.There was also a long-distance walk for Lex: Klaziena Jansen Norg and her husband walked the 350 km Camino Primitivo to Santiago de Compostela as a sponsored challenge. Sadly, a French charity lunch was canceled due to too few registrations, but it was still so special that people wanted to set up these kinds of actions for us.
In July 2024, Lex reached a personal dream: riding a motorcycle again. Thanks to Motor Mobility for the Disabled and a specially adapted bike, he was able to take lessons and a driving test, and get back on the road. Seeing him ride through the polder again was truly magical.
Not everything was a celebration. During the autumn break of 2024, we had to say a sudden goodbye to our beloved cat Julia, 14 years old, who unexpectedly became ill. A big loss in an already intense year. Still, we ended 2024 with gratitude: another year together, with lots of support and donations. The total stood at €123,048, thanks to all actions, big and small.
The year 2025 also brought memories and emotions. We celebrated 14 years together and looked back on four years of rehabilitation following the diagnosis of “incomplete spinal cord injury” – a journey that taught us just how resilient we can be. Our local newspaper, De Binnendijks, wrote a lovely piece about us, and there were new initiatives, such as a bottle deposit fundraiser during the Beemster fair.
And then… something truly special happened this year: a trip to Banff, Canada, for the Brain Cancer Symposium 2025. The natural beauty was breathtaking, but even more valuable was being together with so many extraordinary people – scientists, doctors, patient advocates, families, patients – all united by the same goal: making progress in the fight against brain cancer. There was innovative science, open conversations, hugs, understanding, and compassion. A special word of thanks to The Cure Starts Now for making this experience possible. Meeting in person, sharing ideas, and holding onto hope together was unforgettable. And yet, coming home to Lex and our two girls was still the very best part of all.
And of course, the medical side. From June 2023 to June 2025, there were many MRI scans (June 2023, September 2023, January 2024, May 2024, August 2024, November 2024, March 2025) – and each time, the same tension while waiting for the results. On June 16th, 2025, we were relieved to hear once again: stable disease. No growth, no new tumors. Each time, a moment of relief, but also of reflection: how long will it stay stable? What if it changes?
Finally, an update on possible treatment developments. The Christmas period of 2023 brought an unexpected blow: ONC201, one of the most promising treatments, suddenly became unavailable in Germany. It was a huge setback and a harsh reminder that we must keep searching for possibilities, which means taking action again.
Then, this month, came major international news. The U.S. Food and Drug Administration (FDA) granted accelerated approval for dordaviprone (brand name Modeyso, formerly ONC201) for recurrent H3 K27M-mutant DMG. It is not a cure, but it is a first, long-awaited step that countless brilliant and dedicated people have worked tirelessly for. This approval can mean precious time for many patients – time that is truly life-saving.
We hope the European Medicines Agency (EMA) will follow soon so that patients here, including Lex, will also have access to this drug. Until then, it remains essential to support research and continue investing in finding the cure. We hope it will come in time.
We are deeply grateful to everyone – from scientists to friends, family, and organizations – who have put their heart and soul into making this step possible.
Despite the challenges, we keep trying to enjoy our family, the hugs, birthdays, spontaneous outings, and also the everyday moments: runny noses, sleepless nights, and never enough time. It remains a delicate balance. You want to focus entirely on your family, but we cannot let go of the crowdfunding and the search for new therapies. Because this fight is bigger than ourselves.
We are grateful to everyone who continues to support us, share in our journey, and organize actions. Thanks to you, we hold on to hope, strength, and perspective.
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