Let's Talk About Brain Tumours

Episode 44 - Spotlight on Ahead of the Game Foundation

• The Brain Tumour Charity • Episode 44

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In this episode Anna talks to Dave Bolton, founder of Ahead of the Game Foundation which aims to provide much needed rehabilitation services to cancer patients.
Dave talks about what led him to creating Ahead of the Game and what services they provide.

You can find out more about Ahead of the Game  here

You can read more about Dave Bolton here

You can vist our website here 

If you'd like to talk to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org


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If you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

Sarah:

Welcome to Let's Talk about brain tumours, the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates from the brain tumour charity about what we're doing to halve the harm and double survival.

Anna:

In this episode, I chat to Dave Bolton who is the founder and head trustee of ahead of the game foundation. I hope you enjoy. Thank you so much, Dave, for joining us on the podcast today. It's been a long time coming, but we're really, really pleased to have you here. So how we usually like to start off is just getting guests to kind of introduce themselves in a couple of sentences and just kind of their connection to the brain tumour charity.

Dave Bolton:

Yeah, well, thanks for having me on, first of all, and it has has been a while. So my name is Dave Bolton, and I am the founder and head trustee of ahead of the game foundation. I became involved with the brain tumour charity about two years ago when I started helping their young Ambassador programme. So I would join online with them and they'd ask questions, and it's something that I'm very passionate about. I've also spoke at the conference last year, the business design centre, I was the only speaker where we had organisations and trusts and charities from the brain tumour world all together in one place and it was a real really good occasion, good day and we got a lot done, which is then spiralled into the strategy that's just been kind of launched and the living well programme as well.

Anna:

Yes, absolutely and it's been so appreciated, I can remember I was at that strategy day and we're really grateful to kind of have people like you who are so willing to share their stories and be so open, it really does make a difference. How did you get to kind of where you are now.

Dave Bolton:

I just found every time when my scans are coming back, and it looks though it's reduced. It's which is, as as we know, is quite rare, rare through someone with a Glioblastoma, especially a multiforme IDH, one wild type, and it got past that two year points and I was like, something's working here, let's just keep doing what we're doing and yeah, and that's kind of where I started to think about as I got further and further away and I knew I was taking control of my own situation. And when I started to realise that I decided that I wanted, I'd lost the love for being a professional strengthing conditioning qualification, because you're working with these athletes, and you're looking for 1%. And that 1% is huge, don't get me wrong, it's them making the team if they're not getting, but in the grand scheme of life, it means nothing. So I retrained as a cancer rehabilitation specialist, where I can work alongside people who are diagnosed with cancer, alongside their, their doctors, or their oncologist, their medical team and the physios and having a breast cancer patient cry in front of you, because I've given her her full range of movement back from where she'd had her lymph nodes, scar tissue, where she'd been told she will never have it back again, is the most rewarding thing you can do and it's given people there that hope, but also given them their quality of life back. It's just amazing. So I was only working with three or four people, and then it just started to grow.

Anna:

That's amazing. So how did it turn from that and just you kind of doing it as something that you wanted to do to forming the Ahead of the game foundation? How did that idea come around?

Dave Bolton:

Yeah, so we got to a point where I'm in a category now of 2% of the world's population to survive, and so long, I've just hit my nine year mark. So two years ago, during lockdown, I was like, How can I help those like, like we've said, I just think a lot of people are going through this on the road. Because when people get it, they tend to withdraw into their houses, they hear cancer, they think it's a death sentence when it's not definitely. So how can I help those people? How can I make a mark on this world of cancer? I know it's very hard to and I thought, well, I'll reach out and retrain. And I thought, I want to provide free services because I don't believe anyone should have to pay for rehabilitation when they're when they're diagnosed with cancer, whether it's a brain tumour or those I was specialising in brain tumours to start with. And I was just like, How can I do this? And then there's guy called, an exprofessional footballer Dominic Matteo. He played for Liverpool, Leeds. He's huge and Leeds in Liverpool played for Scotland. A mutual friend of mine from Liverpool FC TV message me to meet up and I went and he said, listen, Dominic Matteo do you know him and I was like yeah I used to watch him. I when I was in the stands, he goes, he's been diagnosed with brain tumour, he's given up, will you speak to him? So I started speaking to him, and we became really, really close and one of my friends said you need to start your own foundation. I said, don't want to he said, Honestly, this is the way to go. So long story short, it was going to be called the Dave Bolton foundation. But then I he kind of said to me, why don't you speak to Dom and get him involved? Because Dom had said, listen, when I'm on the other side of this it's me and you we're going to do some work together. So I said, Listen, I'm stable. I don't I'm not precious about the name. It's not about me. So we both came up and ahead of the game. and foundation if you see from our logo, there's arrows in the brains. So that's kind of a nod to the football tactic side from Dom. So then I was like then then I was I had an office above a health food shop in Haswell and I was training five people who had been diagnosed with cancer out of a friend's gym but it was it's a good gym, but it's an industrial site, there's no windows. So what we did is we had a launch day in what was it, somthing like the 11th of September in 2021. Using Dom's, contacts, and everything we had Robbie Fowler playing, we kind of made it quite exclusive and it was a big launch, but it was a charity event. We raised 26,000 pound from that. From that charity from that charity event, which gave me the basis to grow. We then found a premises which we're currently in at the moment in New Brighton. That funding allowed us to kind of kit out the rehabilitation gym, and everything. We then unfortunately, my good friend Tom Parker passed away to Tom Parker as we're all aware at the brain tumour charity passed away, and I very close with him. We spoke every single night he used to phone me, like three in the morning saying he was scared and I talk him off a ledge and, you know, every single day for two years we spoke, we were in the House of Commons together from lobbying for the underfunding of brain tumours, also for the 60 million that was promised over since 2015, and only 4 million had been delivered six, we were that close, you know? Yeah, brilliant and unfortunately, he passed away. So obviously I was friends with Kelsey Parker as well so I just, I said to Kelsey, Kelsey, because me and Tom always said what we're going to our legacy is going to be changing the way that glioblastomas and brain tumours are thought of funded and also researched, and we're going to, that was our legacy. So I said to Kelsey, I'd love you to come on board as a as a trustee, because you have a different perspective to me and Dominic, you with someone who's lived that experience and they've passed, you have another say on it. Bring in Kelsey on board took us global, because we were on primetime ITV News, exclusive talk, and when we launched it, she was coming on board with her coming on board is just took us seven years ahead of where we should be. I'm delivering assessment in Australia, Zimbabwe, Texas. So we're now currently got 15 people who come in and work on our very bespoke and unique programme within the gym. But we can also we can also deliver that abroad so what happens is if someone's on the online one, and they get accepted onto the course, they get a massive gift box, which has t shirts, water bottles, all ahead of the game weights, resistant bands, and we send it out to them with a nice letter. Also, it's I built out what did I need? When I was at my worst, because it's kind of the inequity of the NHS really the great the emergency, but the aftercare, I didn't receive anyone, I had my full neuroexam I got given an appointment, which was 12 months time, it was like so I was like, What can I do? So what we've done, we've got counsellors on board that we can signpost, them. But also cancer is not just the disease for me, it's the disease for my family, it affects the whole entire family. So we've now got family support workers, we provide, we provide, we do have a thing called ahead of the game heroes. So every month we people apply, we pick people who have been has been a lot of brain tumour, people have been diagnosed and kids and we what we do is we pay for them to go on an experience, give them a day out but also for their family as that respite. And it's for me, that's the reward part of the kind of the work that I do. I don't say job because I love what I do. So if you love what you do, you never really work and it's not really a job. But then we also we've got stuff like Pilates, we have yoga, we put on mindfulness courses, you know, we just tackle it 360 As much as we can. And no one pays for things because I do as I said before, the financial burden cancer puts on someone is unreal. If you go through it, you have loss of earnings, but then a lot of the time their carer or exactly what about say their partner has to become a carer or fundraiser because as we know, a lot of the treatments aren't available in this country. They're in Germany, Israel, France, Canada, America, so people have to pay to go and get that. Yeah. So for me, people shouldn't have to pay for everything is fully funded. At the beginning, it was a lot of work, because we didn't have that much money coming in. And I stood by one thing. So I'd be doing, I'd be doing stupid charity sponsored events. So I'm a snowboarder who didn't like the cold because with chemotherapy, I got neuropathy and my hands and my feet, so just cold cold on my hands and my feet were horrendous. So I put a challenge that I'm gonna swim in the Irish Sea in February, every single day, and it was in 2021, where we have three named storms you know I was in there. I swam in every sort of condition apart from lightning, I was breaking the ice but during that time, I reset my thermostat in my body and I now it's cold water swimming, is so good. I won't go into it. I could talk all day about it. But I do that all the time now and I raised a 18 hundred quid great. This is where the British public are so then in March brain tumours Awareness Month, we did a 12 mile walk, I said at the 12 mile march, and I dressed up as Mr. Motivator Mr. motivator, but it just it looked like there was something about right said Fred where I had like mermaid hotpants on pop socks had a great wrestling thing that I had like a chain the skullcap and just by doing that raise, I had a pink megaphone so we raised awareness for charities and that's about six and a half thousand. So I have a dress up like an idiot for five hours and get get that amount and I risked my life for a month. But then people and what we what we pride ourselves on here at ahead of the game is when people donate money to us, we attach what they've done to so we had a girl, I always say her, she's gonna be ready for a girl 21 year old 22 called Libby Wood, and she raised 1400 pound for us. So what we did is we went to this, this this wellbeing campus, and they delivered, they will use that money to deliver an eight week mindfulness for chronic pain for anything online and in person and the feedback from that was unreal. So anytime we get stuff donated to us, we attach it to something so people know that the money that they're donating 100% of it goes to those who are affected cancer the most.

Anna:

And I suppose for you you've you've been able to experience how rewarding seeing what you're doing is so for them to also experience that is you're passing that on to them, I suppose it's really? Yeah, how would somebody go about getting an initial consultation or kind of signing up to be part of the foundation.

Dave Bolton:

So we have a website, and it's just aheadofthegamefoundation.com. It's an amazing website, there, there's a place where you can register to be on the course and then what happens is, you'll be sent a login detail for members, because what we were noticing, you've got this massive waiting list.

Anna:

Yeah.

Dave Bolton:

But they're just waiting, so what we've done, we are not taking any credit, as Debbie, who's my executive assistant, and does all the media side of things. She's created like a members login, which is invisible, once you remember, you go in, and there's resources, there's affiliate partners for percentages off different like online courses. There's videos for your basic exercises to get yourself ready to come on the course. There's like community forums where people talk in between themselves, because what I also believe massively, and it was something that I did do is we started doing so everyone's wants one. So we started putting on every two weeks when they got up to a standard where they can control their own body weight, we would, what we would do is we'd have a group class session like circuit session. But what we did is when people graduate from our course, they ring the bell, just like you would in the thing, we don't want to loose touch with them so what we would do, we would bring two people back and we'd have six in the class and a lot of them, as we said would be like staying in the house didn't really want to come out when a girl called Christine each other just want to make friends. So we did the circuit class, which was great, the best fit for me was downstairs, they sat there and for two hours, all they did was talk to each other about their diagnosis, what worked for them. And for me, that's the most rewarding thing I think ever about it. So with the online stuff, that's where the community forum is it's given them a voice, he can speak to people, and we're constantly feeding stuff in this. There's blog posts, there's new research, we're constantly interacting with them, making them feel that they are part of the community. When we do have, again, we're now doing another mindfulness online that gets thrown out to them. So we're actually paying now to have it fully video recorded, so it's permanently on there. So you can get involved in there. As I say, if any wants to fundraise for us on our website, it's got everything, it has packs, you can download bunting, T shirts, you get stuff you know, it's a very interactive site, which we're very proud of.

Anna:

It sounds amazing and 100% I would encourage anyone listening to check it out. It's it's really inspiring what you're doing. What's next. What have you got planned, if you can talk to us about anything you've got in the pipeline?

Dave Bolton:

Yeah. Next is literally we've because we've we've exponentially outgrown our capability. Everyone thinks there's like this massive team. This

Anna:

Yeah,

Dave Bolton:

There's three of us,

Anna:

Oh wow,

Dave Bolton:

We've now got people coming up because I've got another side to it as well which is called the Northwest wellbeing hub. And that's the alternative therapy side of things so that's the hyperbaric oxygen chamber, infrared sauna. And I've also got a infrared near infrared panel that I flew in from Australia because they're the world leaders for them and we are just full to capacity. We have people coming up from Eastbourne now we're up in Merseyside, Liverpool, where the Eurovision is, and they're coming up from Eastbourne so and they're paying for a hotel, so we we're literally five weeks away from moving to a new premises. It's a 30 room, former care home. Kelsey Parker has raised 50,000 pound donated towards people and now because they're seeing as I said before, what we're doing with the money and you know, are raising money all over you know we've got money coming in. So we're now invested in further technology and further therapies that the NHS don't provide. And when I say people go, there's no money and rehabilitation, they can't afford to spend money on rehabilitation, so as Anna Crofton them are on one of our videos said, your your foundation is bridging the gap. And the reason we believe we've had testimonials from Australia, from Texas, there is nothing out there like they're what we're doing. So we're currently in the process of moving to a bigger facility to facilitate more therapies, to have a top floor for residential, there's a fully working kitchen, we're going to provide workshops, we're gonna have workshops for the family members to come in, we're gonna have gym memberships for just cancer people, who have been diagnosed with cancer, but also their families at a very, very low rate. We're going to be providing workshops, financial workshops, you name it, there's a kitchen, we're going to have healthy food. But we're also in a position where when people go on a ketogenic diet, which is really good for combating cancer, we can provide meal preps for them and guide them. It's, it's we're just exploded, and I can't I'm so excited about the future. With when I'm when I say to people like the 2%, the world's population on I'll be in one night, that's amazing. But it's not I'd rather than the club that's 98% or nearly 100%. Because if we were to go with the same funding we've got now it would take us 150 years to get where breast cancer is. Now I don't want to take money off breast cancer, I just want fair level of funding and as we all know, brain tumours, the biggest killers of all cancers, yet they receive 1% of funding. It's just shocking. It's shocking. And that's why I now think it's my job to stick up for those who are going through it and those who have passed before, and I'm trying to lobby for change, I'm trying to do as much as I can to try and keep that the voice of change out there to try and meet the people at the powers in the houses of Commons in Westminster. make those changes how many more people have to pass before change happens?

Anna:

Yeah, absolutely couldn't agree more. And I would assume that a lot of people listening would feel exactly the same way and they'll be so grateful if they're not in a position to do so that you are out there campaigning for it. So thank you so much again. It's been amazing.

Dave Bolton:

Lovely as always.

Sarah:

We hope you enjoyed today's episode. Don't forget to subscribe to the podcast so you'll never miss an episode. If you'd like more information, you can visit our website at thebraintumourcharity.org or email our support team at support@the braintumourcharity.org And finally, before you go if you enjoyed this podcast, please can you leave us a review on iTunes or wherever you get your podcasts so we can reach more people and raise more awareness