“It fills me with hope to hear and see first-hand how much effort is being poured into research by scientists.”
In this guest blog post, three of our Young Ambassadors – Emma L, Francesa and Emma H – have come together to share how they’ve been involved in different areas of research.
By The Brain Tumour Charity
As Young Ambassadors, we play an important role in the work of The Brain Tumour Charity. We have lots of opportunities to learn and develop new skills, as well as learning about research. We wanted to share our experience of getting involved in different areas of research, including:
Our involvement with The Brain Tumour Charity allows us the chance to share our personal experience of brain tumours with researchers to help guide the design of their work. A few of us were recently involved in a Quality-of-Life sandpit event, the first of its kind at the charity. The event was focused towards developing better ways to manage the quality of life for children and young adults living with a brain tumour. For events such as these, patient insight and perspectives are vital to help researchers shape the design of their projects and studies around the needs of patients. A range of lived experiences were in the room including a parent, sibling and those living with a brain tumour diagnosis.
Those of us who couldn’t attend were given the chance to share our stories by being featured as case studies during the two-day event. It was so important to show the variety of ways that young people can be affected by a brain tumour and ensure everyone’s voice was heard.
I was very pleased to have the opportunity to share my experience of having a brain tumour and how this has impacted my quality of life at different points. I felt that my story had been well-received and formed the basis for the discussions that followed. This made me feel hopeful for a future where the quality of life of young people impacted by brain tumours becomes a key consideration during the clinical management of patients.
– Emma H, Young Ambassador
Conferences
Conferences provide great opportunities for researchers to showcase their work and their findings with fellow scientists and for attendees to hear about novel findings that could have important clinical implications. Attending conferences is a fantastic way to engage in research by listening to talks and presentations about the latest scientific advancements and their potential to benefit people diagnosed with a brain tumour.
It is eye-opening to realise the amount of work that goes into each piece of research that could contribute to a brighter future for people affected by brain tumours.
Emma H gave a talk on the final day of the Summer School in which she shared her journey as a brain tumour patient to help the delegates gain a better understanding of patient perspectives.
In July 2024, Emma H attended an International Summer School held at the Children’s Brain Tumour Centre of Excellence (CBTCE) within the CRUK Cambridge Institute. This three-day event was intended to educate early career research scientists on novel research findings and emerging technologies and methodologies that are facilitating brain cancer research.
I really enjoyed attending the Summer School and found all the scientific talks very interesting. For my talk, I chose to tell my story and chose to focus on how different I felt during different stages of this journey as I feel it is important for researchers to remember that patients have personal feelings and emotions. I also chose to talk about the #BenignisNotFine campaign. Most of the research talks were angled towards high grade tumours with little scientific interest for low grade, so-called “benign” tumours and I felt it was important for them to be mentioned within the conference.
The researchers were all very supportive and seemed to have found my story powerful and informative in conveying the perspectives of brain tumour patients, especially since most of the delegates had no personal experience of brain tumours themselves.
I feel it is important for researchers to be made aware of lived experiences as I think it helps to remind them of the realities that people affected by a brain tumour are living with and inspires them to drive research forward with better outcomes for patients in mind
-Emma H
Lab tours
In October 2024, we attended a lab tour with the Young Ambassadors at UCL Great Ormond Street Institute of Child Health. The principal investigator (PI) of the lab group, Professor Juan Pedro (JP) Martinez-Barbera, kindly shared the research he and his lab are carrying out on childhood brain tumours including gliomas and craniopharyngioma. The tour was extremely interesting and inspirational, especially knowing that research such as JP’s is helping to improve the outcomes for future patients.
Not all of us have a scientific background so some of the information went slightly over our heads, but the scientists were very good at explaining their research on a simpler basis so that we were all able to understand it. Some aspects of the tour were quite overwhelming because it highlighted how important and vital this research is. The scientists mentioned how they work with patients and neurosurgeons next door in Great Ormond Street Hospital, and this made me think about all the children who have been diagnosed with brain tumours and their families, which, due to our personal experience, really resonated with us.
The highlight of the tour for me personally was just seeing the actual research that was going on and knowing that there are people out there who are helping to find a cure, as sometimes it can feel as though the brain tumour community are forgotten.
– Francesca, Young Ambassador
Careers in research for young people
Alongside being engaged in research as a Young Ambassador for The Brain Tumour Charity, Emma H has become more involved in research since taking the decision to do a PhD at CRUK.
Having been lucky enough to make almost a full recovery following my re-diagnosis, I wanted to pursue my passion for research and am now studying for a PhD. My project is focused toward improving the detection and monitoring of gliomas using liquid biopsy approaches, which involves the analysis of bodily fluids such as blood and cerebrospinal fluid (CSF). When working with biological fluids, I always have the patient in mind, remembering that the individuals from whom these samples have been taken are dealing with their own brain tumour journey. I really enjoy working in the lab and I find that being a patient myself helps to keep me motivated and focused on the end goal of all research into brain tumours which is to allow patients to live longer and better lives
-Emma H
Lay summary reviewing
Completing a lay summary review is where researchers submit basic overviews of their research and ask for opinions and feedback from non-scientific members of the public. Each piece of research always sounds so interesting and incredible, and it fills us all with hope to know that scientists are continually working hard to find cures and improve the lives of those affected by brain tumours.
Each piece of research always sounds incredible, and it does fill me with hope that scientists are working daily to find cures and improve quality of life for those with brain tumours. There are so many different areas of research, and 120 different tumours, so there is a constant need for all the areas of research. The Brain Tumour Charity are the largest dedicated funder of research into primary brain tumours in the UK. Research topics can cover diagnosis, through to a variety of treatments and ways of targeting tumours, and there’s always plenty of promising new research opportunities for us to review weekly!
-Emma L
Although being involved in research is rewarding, at times it can be challenging to read so much content about brain tumours, and the science can be overwhelming.
Sometimes I find that there a couple of things which stop me when getting involved with lay reviews. The first point is that sometimes I don’t understand them. Quite often when a brain tumour diagnosis has been given, it comes with lots of long and complicated words which honestly, I don’t understand. Therefore, when it comes to reading research and answering the question, I don’t always understand the technical jargon that is used.
Sometimes, looking through research can be overwhelming; not only because it can be difficult to understand, but it can be quite close to home. Dealing with a brain tumour diagnosis is such a sensitive topic and can bring a whole load of different emotions and feelings which can be triggered when reading through research studies.
-Francesca
Summary
I feel so privileged to be involved in the research opportunities organised by the charity. It fills me with hope to hear and see first-hand how much effort is being poured into research by scientists. It is so great that The Brain Tumour Charity is facilitating our involvement in research in several different ways to help scientists incorporate patient experiences into their work to hopefully strive faster toward better outcomes for brain tumours. I am really looking forward to being involved in more research opportunities whilst pursuing my own research during my PhD.
Emma H
I find it very inspiring to see all the research work that is happening at The Brain Tumour Charity as it helps highlight that there is hope for those people in the brain tumour community. It also inspires me to get involved more as it reminds me of how important the charity is and all the work they do.
Francesca
I feel so inspired by the research work happening at the charity. Being involved in the research through supporting lay reviews and promoting scientist's work means that I feel I can contribute to important work without being a researcher myself. I really look up to the amazing academics and researchers who dedicate their time and expertise to support The Brain Tumour Charity. To support in any small way is a fantastic opportunity.
Emma L
The two-year Young Ambassador Programme is for young adults aged 18-25, who have either been affected by their own brain tumour diagnosis, or that of a loved one.
