From Despair to hope
Dianne and Nigel Parkes set up Joss Searchlight after their son passed away in January 2011. Joss had been diagnosed with a brainstem glioma and given weeks to live in 2005. He went on to become the longest known child survivor of the condition with no conventional treatment. Joss Searchlight is now a proud funding partner of CONNECT TarGeT.
An ambitious transatlantic clinical trial to accelerate new treatments for childhood brain cancers.
MEETING PROFESSOR DARREN HARGRAVE
“Three years ago I met Professor Darren Hargrave via The Brain Tumour Charity, says Dianne Parkes. He spoke of his mission to find gentler, less toxic treatments for children with high-grade brain tumours. Hearing that gave me something I thought I’d lost: the sense that science was finally turning its full attention toward these children.
“I remember sitting in that meeting, tears streaming down my face, because for the first time since Joss died, I felt like someone truly understood what these children endure.
The brutal treatments, the suffering, the impossible choices. Professor Hargrave wasn’t just talking about survival rate, he was talking about giving children their childhoods back. That’s when I knew we had found our mission.
“We’re funding research that could change the landscape for families facing this nightmare. CONNECT TarGeT is pioneering a different path – one where children can still be children and where families can hope for a future beyond mere survival.
What is CONNECT TarGeT?
The CONNECT TarGeT trial has been designed by international experts from the CONNECT consortium to use state-of-the-art genomic profiling to assign targeted therapies based on the underlying biology driving individual patient’s tumours. It is designed as an adaptive platform trial to allow new therapies to be added when ready, and to stop ineffective ones early and is therefore much more efficient than older trials that studied only one new treatment at a time.”
Professor Darren Hargrave, Great Ormond Street Hospital.
THIS RESEARCH IS PERSONAL FOR US
“We’re incredibly proud to be co-funders of this ground-breaking work. This is personal for us. This is Joss’ legacy in action. We don’t just write cheques and walk away. This isn’t just funding, it’s our promise to every bereaved parent that our children’s lights will guide the way to better treatments, gentler care, and real hope for future generations. When I think about the families receiving diagnoses today, my heart breaks for them, but it also swells with determination.
Because of our partnership with CONNECT TarGeT, those families may have options that Joss didn’t have. They’ll have hope we couldn’t access. Our children’s lives – Joss’ life – will mean something profound. They will light the way forward, and that light will never go out.”
Our Proud Partnership with CONNECT TarGeT
Through our relationship with The Brain Tumour charity and their scientific medical board, we’ve built a real partnership with Professor Darren Hargrave and CONNECT TarGeT because we believe in their vision: kinder treatments that give children a chance at real life, not just survival. We’re funding research that could change everything for families facing this nightmare. I’ve sat beside too many hospital beds, watched too many children suffer through treatments that steal their joy along with their tumours. CONNECT TarGeT is pioneering a different path—one where children can still be children, where families can hope for a future beyond mere survival. We’re incredibly proud to be major funders of this groundbreaking work. This is personal for us. This is Joss’ legacy in action.
Our support for CONNECT TarGeT represents the culmination of a shared vision. This is not merely a grant; it is a partnership built on mutual respect, aligned values, and a common determination to change the trajectory of pediatric brain tumour treatment. CONNECT TarGeT embodies everything we believe research should be: scientifically rigorous, clinically relevant, and fundamentally oriented toward reducing the burden of treatment on young patients and their families. The project’s focus on identifying targetable vulnerabilities in high-grade pediatric brain tumours—and doing so in ways that could lead to precision medicine approaches—represents exactly the kind of innovative thinking that has been desperately needed in this field.
We're a community, united by loss
The families who support Joss Searchlight—through donations, fundraising events, and volunteer efforts—do so because they believe in our mission and trust in our approach. They know that we’re not just another charity asking for money; we’re a community of people united by loss, driven by love, and committed to creating a better future for children with brain tumours. When we invest in CONNECT TarGeT, we do so on behalf of all these families, carrying their hopes and their determination with us.
“We’re determined to help change the landscape for children diagnosed with these devastating tumours. CONNECT TarGeT gives families hope where there has been so little.”
At Joss Searchlight, we are deeply committed to supporting research that has the potential to save lives and improve outcomes for children with brain cancer. The INSTINCT-MB project represents exactly the kind of innovative, collaborative effort that we believe is essential to making progress in this challenging field.
The progress made by the INSTINCT-MB project is a testament to what can be achieved when researchers, clinicians, and charities come together with a shared goal. However, this progress would not be possible without the support of individuals and organisations who believe in the importance of brain cancer research. Your donations to Joss Searchlight help fund the groundbreaking research that is making a real difference in the fight against childhood brain tumours. Please consider making a donation today. Together, we can continue to drive forward the research that will save lives and bring hope to families affected by brain cancer.
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