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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 \u20ac123,048, thanks to all actions, big and small.<\/p>\n\n\n\n
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 \u201cincomplete spinal cord injury\u201d \u2013 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.<\/p>\n\n\n\n
And then\u2026 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 \u2013 scientists, doctors, patient advocates, families, patients \u2013 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.<\/p>\n\n\n\n <\/p>\n\n\n\n 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) \u2013 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?<\/p>\n\n\n\n <\/p>\n\n\n\n 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.<\/p>\n\n\n\n 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 \u2013 time that is truly life-saving.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n We are deeply grateful to everyone \u2013 from scientists to friends, family, and organizations \u2013 who have put their heart and soul into making this step possible.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n Also share our website and like our Facebook page (https:\/\/www.facebook.com\/CureLex<\/a>) and Instagram (https:\/\/www.instagram.com\/curelex<\/a>).<\/p>","protected":false},"excerpt":{"rendered":" De afgelopen twee jaar stonden opnieuw in het teken van vechten, genieten en ook gewoon doorgaan. We willen jullie graag meenemen in wat er allemaal is gebeurd. Voorjaar 2023 begon met een enorme mijlpaal: op 25 maart werd de grens van \u20ac100.000 aan donaties doorbroken. Ongelooflijk hoeveel steun en betrokkenheid we nog steeds krijgen. Kort […]<\/p>\n","protected":false},"author":1,"featured_media":5925,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"footnotes":""},"categories":[7],"tags":[54],"class_list":["post-5924","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-updates","tag-updates"],"yoast_head":"\n![\"\"](\"https:\/\/www.lexbak.nl\/NewSite\/wp-content\/uploads\/2025\/08\/IMG_9543.jpg\")
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