Encouraging the brightest minds to study brain tumours
We brought together our Future Leaders, supporters who help to fund them, and volunteers with lived experience of brain tumours.
By Jo Porter
Molly Fenton with our Future Leaders panel
In a milestone for The Brain Tumour Charity, on 12 June we brought together our research leaders of the future, some of the incredible supporters whose fundraising makes their research work possible, and volunteers with lived experience of brain tumours.
They, variously, took part in two days of scientific workshops, informal networking and conversation as well as an evening reception. This included a question-and-answer session, hosted by one of our Young Ambassadors –Molly Fenton.
You can read more about the workshops here. This is a summary of key moments from a memorable evening.
What is the Future Leaders programme?
The Brain Tumour Charity created the programme in 2020 to support the most promising neuro-oncology researchers at the beginning of their careers.
By funding their post-doctoral research, the programme aims to ensure that exceptional scientists have the resources to study this complex set of diseases. As well as camaraderie and support.
By then providing the opportunity to progress from junior to senior researcher (Junior and Senior Fellowships) this world-first initiative nurtures the next generation of researchers. It encourages them to study brain tumours as a career – a commitment that’s vital to finding new, kinder treatments.
Over 12 years, the programme could provide an aspiring scientist with up to £1.7million in funding, the support needed to set up their own laboratory and the chance to transform brain tumour treatment and care. But don’t take our word for it!
Thinking big, because the problem is big
During the event, Prof. Richard Gilbertson spelt out why the programme is unique. He said he wished the programme had existed when he began his training in paediatric oncology 40 years ago, adding: “The Future Leaders programme is unique – and that’s an overused word – but it is unique. I ran one of the biggest cancer hospitals for children in the US and I’ve never seen anything like this.”
The brightest people in the world have options and the choices they make depend upon the opportunities that are presented to them. What The Brain Tumour Charity does is present to them the opportunity to lead the world in brain tumour research.
Most people don’t wake up in the morning thinking I want to work on brain tumours. They might want to work on viruses or Covid, whatever it might be. But if that opportunity is presented to them, with a pathway forward, like The Brain Tumour Charity provides, they will take it. And then they’re surrounded by a community of folks who are really engaged and want to cure these diseases.”
Professor Richard Gilbertson, Senior Group Leader at the Cancer Research UK Cambridge Institute and mentor to Future Leader Dr Jessica Taylor
Shared Purpose
But first, Chief Executive Dr Michele Afif welcomed everyone to the event, describing it as ‘a gathering of the like-minded’.
She added: “We are united in something very important. A really deep commitment that we all share – to see a change in how brain tumours are researched and those research outcomes leading to treatments.”
Dr Michele Afif welcoming guests to the Future Leaders evening reception
Building hope
Dr Afif continued: “We want to move away from the narrative that has, for too long, been characterised by loss and by harm, and by hopelessness…. And move towards something so much more positive where people with brain tumours have their diagnosis made in a timely way, meet with their treating clinician, are offered options for treatment that are better, kinder and more likely to cure them so that they can live longer and better lives.
“To achieve that kind of tangible change requires research… and core to that is our Future Leaders Programme. Launched in 2020, the Future Leaders programme was from the very outset always much more than research funding for individual projects. The Future Leaders programme is a legacy programme. It is about building hope.”
“To date we have committed £4.5m to this programme and that number will go up. We want it to go up. We have 13 Future Leaders today. We want that to be 30 by 2030, maybe even more – every one of them with the potential to build their own laboratory, build their own team and make the breakthroughs we are looking so hard to find.
Dr Michele Afif
“Because for us at The Brain Tumour Charity what’s important is not just that we fund research. It’s that we fund transformation in research. That is what we are seeking to achieve and that is what our community has asked of us…. But we cannot do it alone. Your support is everything to us.
“It sounds so daunting. We are not daunted. Research is really, really, difficult to do, we already know that… It’s hard. It takes time. There’s a lot of risk. There are a lot of failures along the way, even for the highest quality research. We know that.
“Where do we draw our strength? We draw it from the very community with whom we stand shoulder-to shoulder. We draw it because we can see that, in our community, there are people who have no choice but to face into the difficulties that a brain tumour diagnosis represents. That resilience, that support, that dignity – it shapes us. It changes us from being a charity, from even being a community to being a movement.”
Voices from the event
Young Ambassador Molly Fenton spelt out the challenges she faced before she was diagnosed. She added that living with an inoperable brain tumour still has its challenges. But Molly said she was there on behalf of others, adding: “Since our first visit to meet researchers at Great Ormond Street Hospital last October, three of our young ambassadors have died. In the space of six months, we lost Harry, Alex and Evanne. Three fierce activists.
“So, now more than ever, our group of Young Ambassadors is incredibly invested in the research work being carried out into brain tumours. We want to be involved and we to support YOU, those researchers and future leaders.
Through those meetings and lab visits, we’ve learnt about how difficult and unstable your roles can be. Learning about your research and how dedicated you have to be to study this incredibly complex condition – none of this goes unseen.”
Molly Fenton
Molly had three questions for our panel of two Future Leaders and mentor Prof. Gilbertson. She asked how the programme had led to their current role, what challenges they faced and what hope they had for the future of research into brain tumours.
Dr. Veronica Rendo
Dr Rendo, who was awarded one of the first Future Leaders fellowships for her work on drug resistance in glioblastoma, is now running her own lab. She’s based at the Department of Immunology, Genetics, and Pathology at Uppsala University in Sweden.
Veronica explained how the programme had been a springboard for her career: “I had the tremendous honour of being part of the first cohort of Future Leaders in 2020. Back then I was doing my post-doc in a lab in Boston in the US.
“We were trying to understand why glioblastoma cells are so aggressive, what happens after treatment, why some patients did better than others and whether we could come up with better strategies to treat these tumours.
“My mentor then had been engaged with The Brain Tumour Charity, and he was very keen to introduce me to this network – always talking about the vibrant community, not only on the research side but also on the greatness of their patient involvement network, so I was very lucky to be funded.
That work that was funded by the charity led to the preliminary data which influenced the main aim of my current research group, so that’s how I ended up here.”
Dr Veronica Rendo
Dr. Ola Rominiyi
Dr Rominiyi, a lecturer and Specialty Registrar in Neurosurgery at the University of Sheffield, joined the cohort after Veronica. A current Future Leader. Ola aims to create more effective, kinder treatments for glioblastoma by using drugs that inhibit DNA repair. These would have fewer side effects than current standard of care.
Ola said: “I’m incredibly grateful to The Brain Tumour Charity and to all its supporters. I initially started my career after medical school as a clinician, training in neurosurgery. I never really thought about research. But starting to look after patients who had these really horrible tumours, and doing the best operations we could do and still having to tell them that within 12 months, potentially, they might not be alive was a horrible thing to have to say on a repeated basis. I didn’t want to get to the end of my career, still doing the best operations I thought we could do, and still having to say that patients.
The Future Leaders programme has given me the opportunity to combine research with clinical practice. It’s been absolutely phenomenal. It’s given us the opportunity to start to try and better understand the disease that we leave behind after surgery so that we can tailor make treatments that treat the stuff that we can’t take out as surgeons, and that opportunity means the world. I’m really hoping that we can push that needle forward.
Dr Ola Rominiyi
Ola added that his thoughts and perspectives on the programme had evolved over time. Instead of it being just about the research and working in a silo, it had built a network, almost like a family. It had also given him the opportunity to learn from and collaborate with other researchers as far afield as Boston.
He added: “And as it continues to gather momentum and critical mass that will make the impact of our research continue to skyrocket!”
But he explained that one of the challenges of where he’s based in the north east as that there’s a lack of clinical trials in the region – something that he’s aiming to change.
Reflections
The Brain Tumour Charity is basically a team of real-life superheroes, taking bold risks that are paying off BIG time. They’re not just dreaming up cures; they’re making them happen – connecting patients and scientists to keep everyone grounded and inspired….. They’re pushing boundaries, asking difficult questions, and advancing the science in one of the most complex and underfunded areas of cancer research.”
Evelyn Kamau, Senior Clinical Trials Director
The research is needed, valued deeply and will make a difference. It [the event] started as a ‘them and us’ and ended as a community of shared understanding, belief and respect.”
Baljit Ahluwalia, Involvement Champion, who took part in the Patient Involvement sessions
