Last month I had the enormous pleasure of attending the Bents Charity Butterfly Ball at the Lowery Hotel in Manchester. Solving Kids' Cancer UK are Bents Garden & Home (https://www.bents.co.uk) charity of the year, raising money in memory of Jossie Leaver (you can read about Jossie here). Jossie's parents, Cassie and Stewart, were in attendance along with some of the Solving Kids' Cancer UK team and we were joined by the parents of Lucy and Anya. The family of Reggie Hayes were also at the event (https://www.manchestereveningnews.co.uk/news/greater-manchester-news/dont-think-its-just-tummy-21293245). There was laughter and there were tears. It was a special evening, and in the aftermath of (hopefully) the worst of the pandemic felt even more so. The total amount raised in Jossie's honour far exceeded all expectations and I can only once again extend sincerest thanks to all those who attended and gave so generously to help children with neuroblastoma. Along with Stewart and Chief Executive Gail Jackson, I was asked to say a few words that are shared below.
"I would like to begin by adding my own personal thanks and that of my fellow Trustees to Bents, to everyone involved in organising tonight’s event at this wonderful venue, to all of you for coming, and especially to Cassie and Stewart for continuing to support the charity in Jossie’s memory and honour. It means a great deal to us.
I may be the Chair of Trustees of Solving Kids’ Cancer but the reason I stand here today is because I’m Adam’s Dad. My youngest son was just 5-years old when he was diagnosed with neuroblastoma in 2009. Not uncommonly it took months for Adam to be diagnosed, by which time his entire body was riddled with cancer and he could no longer walk or sit down due to excruciating bone pain. In an instant our lives unravelled, never to be put back together again. Treatment spanning 4 years took us from London to Germany to America but had almost no impact on Adam’s disease and he died at our home in the summer of 2013 surrounded by the fiercest love and most crushing heartache imaginable.
I first became involved in Solving Kids’ Cancer in 2009 when the charity was nothing more than a lone part-time member of staff and a group of committed parents who had come together to help their children. Since then, the charity has gone on to support many children and families, with unrivalled care and compassion that combines personal experience with a deep knowledge of the neuroblastoma landscape. Families whose children are sadly no longer with us can at least take some comfort from knowing they did all they could, and without our help would have had even less precious time with their beautiful children. Without doubt our greatest achievement is that there are children alive today, growing up and free of neuroblastoma, who would not be here had this charity not helped and supported them to access the right treatments at the right time. No matter the odds, as parents we must believe that our son or daughter will be one of the lucky ones, we need that hope. Solving Kids’ Cancer gives parents that hope, and for some it has helped to turn that hope into the gift of life.
But we do not want to simply be a charity that only helps one child at a time. We always will of course, our door is permanently open to families in need. But we want all children and families to have the same hope and the same opportunities. When I joined our Board in 2016 there was only one charity in the UK that supported clinical research for children with neuroblastoma. Why? Because it’s extraordinarily costly, complicated and requires vast amounts of knowledge and effort. Actual trials in the hospital to provide access to new therapies that can cure more children. Other funding for laboratory research is important of course, but on its own it can achieve nothing. With that one charity, CRUK, allocating only a fraction of its total funding to all children’s cancers combined competition was fierce, and children with neuroblastoma had to get in line and wait their turn for access to new treatments and trials. But children with neuroblastoma don’t have time on their side and so we had this crazy notion that a small parent-led charity full of passionate and committed people could change how everything worked. We would dare to do what nobody else was and we would become the research champions that children with neuroblastoma in the UK so desperately needed.
Five years on from that crazy notion we have made incredible progress. We are not rich enough as a charity to be able to do anything by ourselves meaning we have had to work doubly hard to build collaborative funding partnerships to deliver what we know children need. Last year we awarded $1.4M to deliver the first ever joint clinical trial between America and Europe for children with neuroblastoma. We also became the principal UK funder of a Europe-wide clinical trial that will enrol all newly diagnosed children with high-risk neuroblastoma from every part of the UK. And this year we have committed £1M to bring an exciting new combination therapy into the clinic for children over the next 2-3 years, and a blood test to identify which children will benefit most from it. None of this would have been possible without friends and charity partners who have worked with us, and none of it would have been possible without Solving Kids’ Cancer’s leadership, vision, dedication, and commitment.
I could actually speak all night about this and happily will if anybody wants to come and find me later, but I need to wrap things up so will end by saying this. Being the beneficiary of tonight’s event is a massive honour for us at Solving Kids’ Cancer UK. Every penny you give this evening, everything you do to support us as Bent’s Charity of the Year and perhaps even beyond that, know that we really do care about children afflicted by this awful disease, and we really are doing everything we possibly can to help them and their families. We are making a difference and we are going to continue to make a difference. This is what I want each of you to take away from being here this evening."
