On the ground at the Great British Beer Festival

Blog by Lynnette Ellison, Marketing & Support Officer | Duchenne Parent

“All staff and volunteers can remove their hi-vis… the festival is now OPEN”. The announcement echoed round the enormity of the 19th century grand hall of London Olympia and we were off!?

The Great British Beer Festival is unique. It’s a place where thousands of people flock together with one common aim; to savour their favourite tipple and to have the time of their lives! I had the privilege of working at the GBBF in 2016, the last time we were chosen by the good people at CAMRA - the CAMpaign for Real Ale. It felt like a different life back then. People were carefree, frivolous, over-generous with their donations during the financially stable year; footloose and fancy-free. I was also pregnant at the time, with my little Rosie (now 5 years old) so there were no post-shift pints at the free staff bar for me!

I remember the buzz of the enormous crowds, the swell of groups around our fundraisers; eager to hear more about the work we did, desperate to throw their tenners, and twenties in the collection buckets.?

This year, there was a different feeling. People needed this festival. They really needed it. You could feel the sense of urgency, of relief that this event was finally taking place after a two-years’ COVID-induced hiatus. We’ve literally spent 2 years getting out of practice being in big crowds, and the GBBF 2022 was everyone’s chance to get back into the swing of being a part of such an enormous and vibrant event.?

It was like medicine.?

I admit, the first few conversations I had with people were tough. I hadn’t been out ‘telling the story’ in person, for such a long time. As part of my role at Action Duchenne, I support Duchenne families through some of their toughest times, and I always focus on them, rarely bringing my life, and my family into their support sessions or calls. But at the GBBF, I needed to open up to strangers about Duchenne, explain what it means, the effects it has on families, and ultimately talk to them about my son, Samson.?

I had always been able to talk freely about Duchenne, about Samson and our life living with Duchenne. That was pre-COVID. Before I became out of practise in talking about ‘our’ Duchenne, not just ‘everyone else’s’ Duchenne. It’s hard to explain, but that is what makes me effective in my support role - I’ll always make that family I am supporting feel the centre of the conversation. They are the priority, they are the most important person during that call or meeting.?

But at the GBBF, to be asked by a watery-eyed, kind and compassionate gentleman; “and what about your son, how is he?”, it took me by surprise how hard it was to say the words, and to talk about ‘our’ Duchenne. The kind gentleman, who had known a young person who lived with Duchenne, his nephew. We talked about his life, and how he had lived to the absolute full. We cried together, and we laughed. Although I could see his pain, we also shared joy and a common understanding. It was hugely uplifting.

That’s how it rolls fundraising at the Great British Beer Festival, you might get a few knock backs, but then there’s always the inevitable and enormous highs. The incredible feeling of approaching a group of strangers, politely asking; “please may I take 30 seconds of your time to tell you about CAMRA’s chosen charity?”; them showing interest, all turning to hear what you have to say, leaning in closer to hear over the roar of the crowd about how Duchenne affects the lives of children, young people and families, eyes welling up, the looks of devastation when I say “Duchenne is largely unknown, I only found out about it when my son was diagnosed”. Then the soaring feeling of community when you start to go deeper into the topic and they say, “how can I help you guys” or, “my company is looking for a charity like yours to support”.

Of course, we are a charity, we rely on donations of all sizes to do our work, and value each and every one of those donations. We were delighted to raise thousands of pounds which will be spent wisely (I took great pleasure in waxing lyrical about our compelling projects and agility in spending 88.7p in every ￡1 we raise on charitable activities) to help support our much-needed projects, but there was also a wider impact. This year, we made connections. We spent time talking to hundreds of people, forging links with organisations, companies, groups and individuals. We engaged with new volunteers; eager to lend their expertise to support our team and further our reach. We started conversations with other charities and potential delivery partners. We also had a wonderful, wonderful time with our incredible fundraising volunteers who selflessly gave their time, energy and heart; their absolute all, to what I feel is the highlight of my year so far!?

A special thank you to St John Rowntree, Ben Dolling and Albert Wright, for their humour, hard work and support during the days I was at the event. And of course, a sincere thank you to Chris, Anita and all the team at CAMRA giving us the opportunity again to be their chosen charity. Secretly (or not so secretly) I’d love them to choose us again in the future - let’s keep everything crossed!?