By London YPAG,
Hello, I’m Eva and I was welcomed to my first GOSH YPAG on the 31st of May. The meeting was held on Zoom and was an extremely insightful experience- I felt from the moment I joined at 10:45am that this was a nurturing platform- not just for projects to grow, but people too. I was welcomed by the GOSH YPAG Lead, Young Facilitators and my fellow new members. I also met a few pets and family members, which set up the carefree and cozy vibe of the meeting.
After introductions, we started the meeting with a few updates from various members e.g. Kiki Syrad, Director of Research and Innovation (R&I) at GOSH who told us that GOSH is part of the Children’s Hospital Alliance and how she would like to attend one of our meetings to get our input into helping set their research priorities in collaboration with the James Lind Alliance which helps prioritise research, so developments are more efficient.
Session 1- Developing a new formulation of a drug to treat children with a rare form of epilepsy
Then, at 11:15am we kicked off with our first of four sessions of the day. A new formulation for a drug to treat children with a rare form of epilepsy. This was presented by the UCL School of Pharmacy research team.
They started by getting us to answer questions on Menti:
· What is a seizure? (A brief disruption of brain activity)
· What is epilepsy? (A neurological disorder where there is constant electrical activity in the brain causing seizures)
· What are some treatments for epilepsy? (GOSH YPAG members produced many: medication, seizure devices, RNS/VNS and Ketogenic diets).
GOSH YPAG were tasked with making sure the pharmacists had thought of every aspect. You can read more about this in Nishtha’s summary further down this Blog.
It was enthralling to see how members came together to build on such an extraordinary project. With constructive criticism, advice, and thought-provoking questions they helped exemplify this solution, making sure all grounds were covered before it could run.
Session 2- ‘X-linked chronic granulomatous disease’ (X-CGD): help a researcher to explain it in an Infographic
Our second session ran by a Postdoctoral researcher was to create an informative poster on his unique gene therapy solution to X-CGD.
X-CGD is a genetic immune disease where the phagocyte is not as effective when fighting the pathogen due to the absence of proteins. The absence of this protein is the result of DNA mutation which can be changed with gene editing.
The researcher explained all about prime editing where a protein alters the DNA upon entry. The guide RNA goes to the designated DNA, finding it using a searcher. Then a cutter cuts the mutated part of DNA, and the writer replaces the broken sequence with the correct one. The issue with prime-editing lies in the many options possible for the cut- the best possibility is not predictable.
His solution to this was a system that could simulate all the processes at once and shows all the good designs and which ones are less efficient. It can also use longer chains of DNA. This solution would apply to all sorts of genetic diseases; it just needs to be known and understood.
That was the task at hand for GOSH YPAG: to design an information sheet that was both engaging and informative. We produced many ideas, ensuring that for it to be digestible it should be separated into sections, and we recommended a video game style with animated diagrams to explain the concepts.
Session 3- Quantum Sensing Technologies: ‘Quantum Health, Tiny Tech’
For our 3rd session after lunch, we discussed the introduction of Quantum technology in science and healthcare with visiting researchers. This was in honour of it being UNESCO Year of Quantum Research and Mechanics. We discussed OPM-MEG helmet- a wearable brain scanner for children with epilepsy. A stethoscope that can hear the smallest whispers in the brain- aiding with diagnosis and finding areas for treatment.
As a group we had varying understanding of Quantum and discussed everything from the science of superimposition and entanglement to the societal impact of introducing quantum to day-to-day life (conspiracies or acceptance?). We also got quite existential- it’s scary to comprehend that we are just many interactions between particles.
Since this was an introductory session, we expect to hear more about this tiny tech in future GOSH YPAG sessions and we are going to help the researcher to co-develop the next session for our July meeting!
Session 4- Paediatric Myocarditis and the research process – an introduction
For our final session of the day, the researcher, a Cardiology fellow zoomed in from her GOSH ward where she was on duty over the weekend. We discussed mycocarditis and how to improve its diagnosis and care (particularly for paediatric patients).
Did you know?
· Myocarditis affects the muscles (myo) of the heart (card) and they become inflamed (itis).
· Some patients have minor symptoms while others can be life threatening.
· To add to this there is no earlier national study to help provide efficient strategies and their long-term outcome for patients.
The researcher and a team of cardiologists want to carry out a surveillance of paediatric myocarditis cases to track individual symptoms, their commonality and the effectiveness of various forms of treatments (from antiviral medication to steroids and IV medication). We provided avenues for them to raise awareness on the disease and this project.
GOSH YPAG members offered various platforms from Instagram (either making a subject specific account or sharing the information to relevant existing accounts for larger reach), providing information directly to cardiac wards and using GOSH ICVD research team’s newsletter to spread information.
Meeting ending (GOSH YPAG Updates!)
We finished the meeting with updates, which showcased to me that every item presented during GOSH YPAG will be seen to the very end. We learned about the regulatory body approval of ATT- heart and received compliments from the Research Ethics Committee (REC). The Fracture study featuring AI identification of broken bones in paediatric patients was spotlighted in the British Medical Journal (BMJ)
We also received information about upcoming events and opportunities like the GOSH Young Visitors Programme and Medical School Meet Ups. Presenting us with these opportunities allows us to branch our horizons with GOSH YPAG as a sturdy foundation to launch from.
I am excited to see what is in store for our next meeting and all future GOSH YPAG opportunities.
Thank you for reading!
Eva
Hi! I’m Nishtha and I became a member of the GOSH YPAG in May 2025, attending my first meeting on the 31st of May!
I’ve always been extremely passionate when it comes to the idea of making healthcare more inclusive and accessible for everyone – especially for young people -and joining the GOSH YPAG felt like the perfect opportunity to make a difference and be part of something genuinely special and meaningful. Talking about new treatments and hearing what upcoming projects researchers are working on, only served to make me more enthusiastic about joining and getting involved.
Joining my first meeting
To say I was nervous would be an understatement. I’d never been involved in something like the GOSH YPAG before and I wasn’t quite sure what to expect. I had about a million questions running through my head. Would it be formal? Should I have done some research beforehand? Would I even have anything to say?
But as soon as the meeting started, those worries began to fade. Everyone was so welcoming- from the other young people to the young facilitators. It didn’t feel formal or intimidating at all, and everyone’s opinions were heard and valued, which really stuck out to me.
All the researchers were amazing, and the projects they were talking about were so innovative and interesting. It was inspiring to see how passionate they were about their work and how important it was to them to involve young people and hear our feedback. I was surprised (in a good way!) at how collaborative it was. It wasn’t just information being sent our way, but a chance to share our opinions and concerns.
What stood out to me the most during that first session, was how real everything felt. Researchers had come with to us with treatments and projects they were working on and genuinely took on our feedback and ideas, wanting to make their work as accessible and inclusive as possible.
My favourite session
There were so many amazing sessions presented throughout the meeting – from the effects of quantum technology on medicine to paediatric myocarditis and the ongoing research into treatment options. But the session that stood out to me the most was one delivered by researchers at UCL, who were exploring a rare type of epilepsy and working on developing an alternative treatment. They explained that the current treatment, given in tablet form, is often difficult to administer to babies and young children. In response, they were developing a new form, making it much easier to take.
What I really loved about this session was how interactive it was and how inventive the project felt. It was fascinating to see how many different elements had to be considered – from the science behind the treatment to how it would be packaged and marketed. Even tiny details could have a massive impact on how the medicine is received and used by both children and adults.
It was interesting to consider all the different angles involved – not just the medical side, but the practical, emotional, and social factors too. The treatment they’re developing felt truly innovative and has the potential to significantly improve the options available for children living with these rare types of epilepsy and the opportunity to be a part of this change felt amazing.
Thanks for reading!
Nishtha
An update from Parveen on what the GOSH YPAG have been working on in January.
Esme, Nicke and Freya explore research at Great Ormond Street Hospital for Children (GOSH).
We play Pictionary using research concepts intead of the usual game cards, allocated to different levels of difficulty.
