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“It’s a different kind of relationship” – the benefits of working with our family-led charity partners

20
Sep
2024

Collaboration is essential in science. By sharing knowledge, ideas and skills, we can turn a disease from one that is always fatal into one that is often treatable or even curable. This collaboration can take many forms and involve multiple groups of people. Here, Isy Godfrey meets two scientists who work closely not only with each other, their other team members and their peers abroad but also with two of our amazing family charity partners.

Posted on 20 September, 2024 by Isy Godfrey, Dr Yura Grabovska and Rita Pereira

Montage of two photos - one of Dr Yura Grabovska in the lab next to one of Rita Pereira in the lab

Image: Dr Yura Grabovska (right) and Rita Pereira in the lab at the ICR.

Dr Yura Grabovska and Rita Pereira are busy discussing some new data when I join them for a chat in the Centre for Cancer Drug Discovery at The Institute of Cancer Research. Yura, who is a bioinformatician, works alongside PhD student Rita in the Glioma Group, which is led by Professor Chris Jones. Their team is working to better understand what drives the development of brain tumours in children and how we can use this information to develop new and effective treatments.

In addition to sharing a passion for improving outcomes for children with gliomas – brain tumours that can occur throughout the brain – Yura and Rita have something else in common. These skilled scientists can both contribute to the ICR’s mission because of the generosity of two of our family charity partners.

“I always knew I wanted to work in research”

Rita’s PhD is sponsored by the Rudy A Menon Foundation, which was founded by Rudy’s parents, Vidhu and Somnath, after he died at the age of 26 from gliomatosis cerebri. This type of brain cancer, which primarily affects children, teenagers and young adults, is highly aggressive. Rudy – an active, successful and sociable young man with an infectious enthusiasm for life – first noticed symptoms in January 2013, and less than five months later, he passed away. The Rudy A Menon Foundation funds research on gliomatosis cerebri and other rare brain tumours in the hope that, one day, no young lives will be lost because of a lack of research.

Rita’s project is centred around gliomatosis cerebri tumours, with a particular focus on a gene called EGFR, which seems to be linked to highly invasive brain tumours. The first part of her project involves making new models of the disease by inserting EGFR into the developing brain cells of mice. This process should also provide information on how the gene causes tumours to form in the brain and how it promotes the disease to spread. In the second part of her project, Rita will use these models to test therapies that target EGFR, including drugs currently used to treat other tumour types, as well as newer treatments.

The exciting new treatment approaches that Rita will test include small molecule inhibitors, antibody therapy, and potentially CAR-T therapy, in which the patient’s immune cells are genetically engineered to help them attack cancer cells. The long-term goal is to provide evidence that clearly demonstrates the need for clinical trials investigating EGFR-targeting treatments in people with gliomatosis cerebri.

“I am so grateful to the Rudy A Menon Foundation,” said Rita. “Vidhu and Somnath are so kind and supportive, and they are really interested in the research behind the disease.

“I always knew I wanted to work in research, and the ICR’s heavy focus on translational research to bring laboratory studies through to clinical trials made it my top choice. Being able to drive my own project is really empowering and inspires me to come to work every day. This feels like the right team and the right environment for me to do my best work.”

Rudy A Menon in the sky riding on a parasail

Image: Rudy A Menon. Credit: The Rudy A Menon Foundation.

“I wanted to work on gliomas, which are generally understudied”

The bulk of Yura’s salary is funded by the Ollie Young Foundation, which also makes a generous contribution towards his materials in the lab. Yura’s work is further supported by the French charity Rayon de Soleil and the US-based Joshua Bembo Project and AYJ Fund, all of which we were kindly introduced to by the Rudy A Menon Foundation.

Ollie’s parents, Sarah and Simon, set up the Foundation in memory of their sweet, cheeky son, who died from a glioblastoma a day before his sixth birthday. Glioblastomas start in the brain and are known for being quick-growing and aggressive. In Ollie’s case, the disease progressed so quickly that just three months before he passed away, Ollie still appeared to be in perfect health.

Sarah and Simon want to help ensure that other families do not have to experience the terrible loss that they have had to endure. As part of their commitment to funding research at the ICR, they decided to support a specific person on the team, and Yura’s role made him the ideal candidate.

Find out more about our family charity partners, whose support and dedication drives our work forwards. 

Find out more 

Yura works across all the projects that his team carries out, so he has an excellent overview of the Glioma Group’s progress, challenges and achievements. During his PhD project on atypical teratoid/rhabdoid tumours – another type of paediatric brain cancer – Yura participated in the INSTINCT research programme. This programme involved a collaboration between several research institutions, including Newcastle University – where he was working at the time – and the ICR. 

“The programme gave me the opportunity to work with Chris [Professor Jones], and I became very interested in his team’s work,” said Yura. “I had a good background in brain cancer biology, and I wanted to work on gliomas, which are generally understudied. Everyone told me, ‘Chris is who you need to be working with,’ so I reached out – the rest is history!”

Yura is not focused on a specific project but provides informatic support, working with Senior Bioinformatician Alan Mackay to analyse and feed back on the datasets that the other people on his team generate from their interrogation of patient samples. This analysis is key to identifying drug candidates that show potential to be developed into effective and safe treatments.

Yura said:

“My role means I’m involved with lots of data and lots of projects, and my day-to-day work is driven by what my colleagues are working on. I find it really interesting. I love the feeling of getting a new set of data that not many people have worked on and determining how to put it into context in a meaningful way so that it helps the project move forwards. It’s a bit like solving a puzzle.

“I am so thankful for the support I’ve received from the Ollie Young Foundation and the Rudy A Menon Foundation. Without them, I wouldn’t be able to do what I’m doing.”

Montage of two photos of Ollie Young in school uniform

Image: Ollie Young. Credit: Sarah Simpson/Ollie Young Foundation. 

“It’s humbling and really makes you feel accountable”

Relationships with charity partners are crucial to the overall success of the ICR’s endeavours to defeat cancer, but they are also highly beneficial to the researchers involved.

“It’s been great getting to know the Menon family,” said Rita. “I first met them last year at the International Gliomatosis Cerebri Conference in New York, which they provide financial support for, and I’m now working with them on the next one.”

Rita sends the Foundation regular updates on her work, and, in turn, they keep her up to date with their latest fundraising efforts. These include the annual “A Walk Around the World for Rudy”, which involves hundreds of people walking a total of nearly 54 million steps as a team, raising money in the process. This year, one of those people was Rita.

“I have the app!” she said. “I did my best to maximise my step count each day throughout the 35-day challenge, but I was nowhere near the 1 million steps that two of the walkers achieved. It’s fantastic being part of this fun event, which allows so many people to honour and share their memories of Rudy.”

Yura agreed that partnering with family charities is a special experience for researchers. He said:

“It’s a different kind of relationship than the one a researcher would have with a typical funder. It involves a personal relationship with the funder, which puts you face to face with the effects of the disease.

“Working in cancer research, the impetus is already there to work hard, but this relationship definitely encourages you to put in the extra effort. It’s nice to know that what you’re doing is very important to someone specific – it’s humbling and really makes you feel accountable to deliver something meaningful.”

Yura has been able to meet Sarah and Simon Young in person several times. Together with Professor Jones, he has also led them on a tour of the lab to give them a better idea of the day-to-day work they are helping to fund. He has also met Rudy’s parents, and he recently joined a large group walk in memory of their son, which took place along the South Bank in London.

A large group of people pose on the South Bank during the Rudy A Menon Walk to Remember

Image: Yura Grabovska joined the Remembering Rudy Walk in London. Credit: Rudy A Menon Foundation.

“I’m keen to help develop new treatments”

Belonging to the same research team means that Yura and Rita work closely together and have lots of interaction. Yura analyses the data that Rita generates and then they discuss the next steps, working together to determine the best approach.

Such teamwork is essential to maximising our progress towards improving outcomes in gliomatosis cerebri and other childhood brain tumours, and this advancement is urgently needed.

“There are lots of challenges in this area,” said Rita. “The blood-brain barrier, which protects the brain by controlling what can enter the brain from the blood, means that many of our current treatments prove ineffective. Also, gliomatosis cerebri is a rare disease, so it’s hard to establish clinical trials. There are not enough patients in the UK to design a trial here, so international collaboration is needed, and this presents various hurdles.”

Yura added:

“There has been lots of development across different cancer types, but, ultimately, radiotherapy and surgery are often still the gold standard, and this isn’t viable for gliomatosis cerebri because it is so spread out, like a spider’s web. As a result, we are reliant on immunotherapy and other drugs, which often do not work well in this cancer type.

“We still need to further our molecular understanding of the disease, as we haven’t been able to translate our findings into practice and better outcomes, yet.”

‘Yet’ is the important word here, because both Yura and Rita believe that better treatments are on the horizon. This optimism is partly due to the fact that the team is now benefiting from being part of the Cancer Research UK Children’s Brain Tumour Centre of Excellence. The main focus of the centre is to generate preclinical evidence to support molecular targets that show potential. Together with our link to the CONNECT consortium, this should speed up these therapies making it into a clinical trial.

“This joint initiative aims to increase the rate at which new therapies can be created,” explained Yura. “Our scientists identify potential molecular targets with good evidence behind them or determine whether a potential drug compound exists. They then test them in models representing the disease, while our colleagues in the Centre for Cancer Drug Discovery can design prototype drugs that work against these molecules in the tumour. This is really exciting – I’m keen to help develop new treatments and hopefully start to see the benefits.”

Unofficial partnerships also have an important part to play. Rita and other members of her team are in regular contact with the relatively small community of scientists around the world who are also working on gliomatosis cerebri.

“There aren’t many of us,” Rita said, “so we help each other out where we can because we all have a shared goal. We sometimes share data and samples, in the knowledge that this collaboration might be the key to improving outcomes for certain children worldwide in the future.”

Professor Chris Jones and Dr Yura Grabovska with the Ollie Young Foundation in the lab

Image: From left to right, Simon Young, Stuart Collin and Sarah Simpson from the Ollie Young Foundation visit Professor Chris Jones and Dr Yura Grabovska in their lab. Credit: The ICR.

Strong partnerships are crucial for making progress

Our family charity partners are also strong proponents of working with others to further their cause. Both the Ollie Young Foundation and the Rudy A Menon Foundation are heavily involved in the wider field of paediatric brain cancer and in their communities.

Although the number of people who share their experiences is relatively small, they have formed a closeknit group, providing support networks and a strong infrastructure for other families who have to deal with devastating diagnoses.

We continue to be inspired by how Vidhu, Somnath, Sarah, Simon, and the other families we work with have managed to use the most difficult moments in their lives to fuel their positive, proactive and selfless drive to help others. We are honoured to work alongside them and delighted that their partnerships with specific researchers are proving to be fruitful.

We are confident that the strong partnerships our scientists have with each other, with researchers outside of the ICR and with family charities will help lead to many lives being saved.

We are world-leaders in the study of cancer in children, teenagers and young adults and have made the huge strides over the past decade in improving treatment options for children with cancer.

This progress is made possible because of long-term investment in this area of research, including from our supporters and family charity partners.

But treatment options for children remain limited. Your regular donations will help us develop the new, kinder innovative treatments that are urgently needed for children with cancer.

Make a monthly donation today

Tags

Chris Jones brain cancer childhood cancer family charity partners childhood cancer awareness month glioma team Gliomatosis Cerebri yura grabovska rita pereira Rudy A Menon Foundation Ollie Young Foundation
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