Meet Adam, Activities & Volunteer Coordinator at The Brain Charity
Learn more about Adam's lived experience with epilepsy
As part of Epilepsy Awareness Week, we’re shining a light on the people behind our services and the lived experiences that shape the support we offer every day.
Meet Adam, our Activities & Volunteer Coordinator. In this blog, Adam shares his journey to The Brain Charity, how living with epilepsy has influenced his work, and why raising awareness and understanding of the condition is so important.
Background and journey
Adam’s career path has been anything but conventional. Beginning in hospitality, he managed bars and restaurants in the UK and abroad, including time spent working on a luxury passenger train in Canada.
Later, Adam moved into the corporate world as an IT Trainer, creating training materials and delivering sessions to staff.
But everything changed in May 2023, when Adam developed epilepsy.
Through that experience, he realised he had a story worth sharing and a voice that could help others. That realisation ultimately led him to The Brain Charity.
Turning lived experience into purpose
After his diagnosis, Adam became acutely aware of how limited support can be for people living with neurological conditions.
Adam explained:
“When I discovered the role supporting volunteers at The Brain Charity, I jumped at the chance.”
Living with epilepsy has shaped not only Adam’s career path but also his approach to supporting others.
“I like to think my lived experience helps me approach my role with genuine compassion. It gives me a more personal insight into the challenges of stigma, discrimination, and misunderstanding that people living with conditions face every day. And that understanding and compassion developed through my own lived experience shapes everything I do.”
Role and responsibilities
As Activities & Volunteer Coordinator, Adam plays a vital role in supporting both the charity’s volunteers and the wider community.
Day-to-day, his work includes:
- Recruiting and supporting volunteers who give their time to help others
- Organising social activities that build confidence, skills, and connection
- Championing volunteers and celebrating their achievements
- Creating a welcoming, inclusive environment for everyone who visits
At the heart of Adam’s role is community.
“These activities are about more than just filling time; they help people build friendships, confidence, and a sense of belonging. That’s something everyone deserves.”
A personal perspective on epilepsy
For Adam, living with epilepsy has brought personal challenges.
“Being diagnosed later in life was life-changing. I had to give up my driving licence, stop certain hobbies, and after each seizure, I felt like I lose a little bit of my dignity.”
But alongside those challenges came a powerful shift in perspective.
“I discovered a deep trust in people. Those who truly matter will look past your condition and see you. That realisation can fundamentally change how you face the world.”
Epilepsy awareness: What people need to know
As part of epilepsy awareness, Adam is keen to challenge common misconceptions about the condition.
“Epilepsy is not a one-size-fits-all condition. There are over 40 different seizure types, and more than 70% of cases have no known cause.”
He also highlights some important facts:
- Not everyone with epilepsy are affected by flashing lights
- Not all seizures involve convulsions
- Some seizures may appear as staring, confusion, or unusual sensations
Understanding how to respond is equally important.
“Basic seizure first aid can make a huge difference, cushion their head, remove nearby hazards, offer reassurance, and time the seizure. If it lasts longer than five minutes, it’s a medical emergency.”
Impact and highlights
Since joining The Brain Charity, Adam’s proudest achievement has been building strong relationships with volunteers.
“Being told I’ve made volunteers feel valued in their roles is the biggest win I could hope for.”
His work helps ensure that volunteers feel supported, empowered, and recognised, enabling them to continue delivering life-changing support to others.
Breaking down barriers
Adam believes that stigma and misunderstanding remain the biggest barriers for people living with epilepsy.
“Medication side effects and the aftermath of seizures can sometimes be misinterpreted as laziness or lack of focus. Greater understanding and better representation can go a long way in changing that.”
What makes The Brain Charity special?
For Adam, the answer is simple:
“It’s the community. The centre is one of the warmest and most welcoming places I’ve ever been. It’s a safe space where everyone can be themselves.”
Motivation and personal insights
On challenging days, Adam finds motivation in the people around him.
“Our volunteers live and breathe the charity’s values. That’s incredibly inspiring.”
Outside of work, Adam enjoys writing poetry as a way to process experiences and reflect.
“It’s cathartic. It helps me focus on strengths and the things that bring joy, even in difficult times.”
And a surprising fact?
While travelling in South Africa, Adam took on the world’s highest bungee jump from the Bloukrans Bridge, the world’s largest arch bridge.
Looking ahead
Adam’s story is a powerful reminder of why awareness matters.
For Epilepsy Awareness Week and beyond, we encourage everyone to take the time to learn more, challenge misconceptions, and support those living with epilepsy.
Because understanding can make all the difference.
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