Beyond Diagnosis: Manchester Community Festival 2026

Beyond Diagnosis: NF1 and Noonan Syndrome Community Festival 2026

The event was led by Dr Shruti Garg and Dr Caroline Lea Carnall of the University of Manchester's SPIN Lab, with support by clinicians from Royal Manchester Children's Hospital.

Georgia Baum, NTUK Youth Ambassador, who has NF1

"On 25th April, Manchester Museum opened its doors for a truly special occasion, the Beyond Diagnosis: NF Community Festival. It was a day dedicated not only to learning, but to connection, curiosity and community. I had the privilege of attending alongside Charity Director Karen Cockburn and specialist nurse Samantha Gaden, and from the moment we arrived, it was clear this was more than just an event…It was an experience.

The festival centred around one of the most fascinating and complex parts of the human body: the brain. Designed to be interactive and accessible for all ages, the space was filled with engaging activity stations, hands-on experiments, and informative resources that brought neuroscience to life in a way that felt both exciting and easy to understand.

One of the most memorable stations gave us the chance to explore how brain signals are measured. Using real equipment, we were shown how electrical activity in the brain can be recorded, the technology medical professionals use to help diagnose conditions such as epilepsy. They even had cute bunny ears on to make it less intimidating for younger children. Seeing this process up close was incredibly powerful. It’s one thing to hear about medical advancements, but witnessing them in action offers a whole new level of appreciation for how far science has come.

Another highlight focused on concentration and memory, something we often take for granted. This activity challenged us to balance blocks while simultaneously learning and recalling a dance sequence, alongside remembering an audio recording played through headphones. Then came the twist: we had to repeat the task while the blocks were deliberately unbalanced. The difference was immediate. What initially felt manageable suddenly became much more difficult, offering a simple yet striking demonstration of how our environment and focus can impact cognitive performance. It was a reminder of just how intricate, and sometimes unpredictable, the brain can be.

We also explored a series of optical illusion tests that invited us to question what we see and how we interpret visual information. Looking at a collection of images, we were asked to identify patterns, make assumptions, and describe what we perceived. The results were fascinating. It became clear that our brains don’t always present us with objective reality; instead, they fill in gaps, make guesses, and sometimes even mislead us entirely.

As the day drew to a close, the atmosphere shifted into something even more meaningful. Over food and a few cups of tea, people gathered to talk, share experiences, and connect. It was a chance to speak not only with healthcare professionals and researchers, but also with others within the NF community. I had the pleasure of meeting several members connected to Nerve Tumours UK, and it was genuinely heartwarming to meet them all and hear their stories.

What stood out most to me wasn’t just the knowledge gained, but the people. Every conversation, every shared experience, and every smile reinforced how strong and supportive this community truly is. The NF Community is filled with individuals who inspire, uplift, and remind you that you are never alone on this journey.

Events like this are so much more than educational. They are empowering. They create safe spaces for learning, for connection, and for hope. If you or someone you know is affected by Neurofibromatosis, I cannot recommend these events enough. They offer a unique opportunity to learn more about the condition, meet incredible people, and feel part of something truly special.

Thank you to the team who looked after us all at the event, the work you are doing is truly incredible and appreciated more than words can say. It is your hard work that empowers us as patients and gives us hope for the future.

I’ll certainly be looking forward to the next one, and I hope to see you there!

This event was funded by the University of Manchester, the Children and Young People's Mental Health Theme of the NIHR MH-TRC Mission and the Mental Health Theme of Manchester's Biomedical Research Centre.