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Meet our volunteers

Volunteers are a vital part of our team, collaborating with us to accelerate change. Below a few volunteers share, in their own words, why and how they are involved.

Rebecca’s story

What does your volunteer role with The Charity involve?

I am a Young Ambassador for The Brain Tumour Charity, fundraising and raising awareness about brain tumours alongside the wider group of ambassadors aged 18-25. This means I get involved in all sorts of activities, from contributing to the charity’s new strategy, by being a member of their steering committee, to collaborating on fundraising campaigns and sharing my personal experience with brain tumours both locally and with wider media.

What inspired you to get involved as a volunteer??

When I was 14, I was unexpectedly diagnosed with a brain tumour just before I began sitting my GCSE’s. I underwent successful treatment, but have been left with lifelong health problems. Despite my diagnoses coming during one of the most important parts of my education, I’ve managed to complete my undergraduate and Masters degrees, and carve a career within the field I wanted to work in; however, it’s taken a lot of self-advocacy, and wouldn’t have been possible without the support of my friends, family and peers along the way.

I wanted to become a Young Ambassador to help ensure that all young people affected by brain tumours can also go on to achieve their personal best, and to feel fully supported whilst doing so.

What have you most enjoyed about your volunteering so far?

Becoming a Young Ambassador has led me to meet a fantastic group of fellow peers, all of whom have also been affected by brain tumours in some way. I’ve really enjoyed socialising and working closely with the group to consider how we can best raise awareness and fundraise for the charity over the course of the two-year role. I can’t wait for us to all meet up, in person, for the first time, soon!

What piece of advice would you give to someone thinking about getting involved?

There is no ‘right’ way to get involved in volunteering; whether you can give a little time or a lot of time, whether you choose to get involved virtually or with activities in person, and whether you sign up to lots of the activities or pick just the ones you’re the most excited about. All ways of getting involved are positive ones – and so if you’re interested, give something a go!

Liam’s story

What does your volunteer role with The Charity involve?

My voluntary role revolves around policy and campaigns. Focusing on The Charity’s external and political campaigns as well as informing the charity of any political events or statements that could have an impact on the community in some way. My main contributions involve a weekly report as well as conducting research and writing drafts on a variety of things that the team may need additional support with.

What have you most enjoyed about volunteering?

There are honestly so many things that I can choose from! I would start with the fulfilling feeling you get from helping, in any small way, to try and create positive change and attention for those affected by brain tumours. It makes you feel as if you are part of a truly special community. 
The main highlight that stands out for me over the past year volunteering is contributing to the charity’s Scottish manifesto. It was a very exciting and interesting project to be a part of.

Is there anything that surprised you when you signed up to volunteer?

One thing that did surprise me initially was how well the charity communicates. I’ve had fortnightly calls with my volunteer coordinator, who also kept in touch in between those calls if there were any extra opportunities that I could help with.

This is my first voluntary experience, so I was unsure what to expect, but I was made to feel very welcome and have learnt so much throughout my time volunteering, whilst still being able to continue with full-time work.

What piece of advice would you give to someone thinking about getting involved?

I would say to try and get involved as much as you can. There is so much to learn and gain from a personal and professional development standpoint. Moreover, you can meet some incredible, friendly people who do such amazing work. All this while contributing to a worthwhile cause.

Nicola’s story

How do you support The Charity as a volunteer?

I’ve been involved as a Brain Tumour Charity volunteer in lots of different ways. I’m passionate about using my experiences to make a difference, so I became an Involvement Champion and BRIAN Ambassador and I also help the Research Involvement Network. I contribute through sharing stories and videos and taking part in regular team meetings. I raise awareness by wearing The Charity’s clothing and accessories to help too. 

Being involved is really good fun and it’s lovely to now know lots of people who understand and are also keen to help support others affected in some way because of a brain tumour.

Why did you decide to volunteer in this way?

I came to support the Brain Tumour Charity as their awareness and understanding has been so helpful throughout my recovery and it’s important to me that, by sharing my own knowledge and experiences, I can help accelerate positive change in how people affected by brain tumours are diagnosed, supported and cured.

What change would you like to see in future through your volunteering? 

I’d really like there to be much more of an awareness of brain tumours for everyone in future. My own brain tumour wasn’t discovered for 7 years and if we’d have known more about the side effects of having one, we would have perhaps recognised mine a lot earlier than we did.

Outside of volunteering, what’s important to you and how do you spend your time?

I like to spend time with family and friends and enjoy life in all ways I can. No more future sky dives for me (!) but I do like doing martial arts and other sports and also study and learn new things to help me keep fit and healthy too!

Leanne’s Story

Leanne and her family set up Emmy’s Way, a supporter group raising funds for The Brain Tumour Charity, in memory of her daughter, Emmy.

Why did you decide to support The Charity?

The Brain Tumour Charity is so important to us as family. Knowing we have somewhere to go and talk to someone who may have been on a familiar path, sharing information with professionals to highlight the importance of brain tumours too. Since losing our daughter, Emmy, we made a promise we will do anything we can and it’s a promise we will not break.

Why is volunteering important to you?

Helping The Charity and raising awareness is really important to us. Sharing Emmy’s story helps us to keep her memory alive and it means a lot to know we can help other families in the future. We had the chance to share Emmy’s story on the radio, which was just amazing. Emmy was such a loving, caring child – she would have loved being able to help in any way she could.

Has being involved in this way had an impact on you?

Supporting The Charity has been amazing, it has really helped us have some foundation through our grief for Emmy. Personally having something positive to focus on and knowing how much it will help in the future keeps us going.

Outside of volunteering, what’s important to you and how do you spend your time?

Being a full time mum, I have two children at home who help me think of ideas for Emmy’s fund, as well as home life involving school runs and shopping. Having the chance to volunteer keeps me going at home when the children are at school and is something to focus on. I look around for ideas we can do, being someone who loves crafts – from painting and drawing to crochet – I love to aim my ideas around Emmy and how she would have wanted to help.

Andy’s story

What’s your volunteer role?
I’m a Digital Peer Support Volunteer. One of The Charity’s most popular services is our closed Facebook Support Groups, which offer peer to peer support to thousands of members. My role involves managing the requests to join these Groups and recording member’s details.
Most importantly for me I foster the warm, welcoming and inclusive nature of the support groups by ensuring new members are personally welcomed to the group and posts in the group are responded to by The Charity where appropriate. I am also supporting our growing use of other digital communication channels, for example HealthUnlocked.
The role is very flexible as I choose the times that I volunteer and I can help from home.

Why did you start volunteering in this way?

When my Meningioma was discovered nearly four years ago, I went from having no knowledge of brain tumours to surgery in just 6 weeks. During this time, and my subsequent recuperation, I found the Facebook Support Groups to be a massive help and comfort. They helped address my concerns and the many shared experiences provided real-world guidance on what I was going through and what I could expect in the future.

I vowed then to try to help any others being impacted by diagnosis and treatment of brain tumours who like me are often looking for more guidance and support. I recently retired early which has given me more time to support others in the way I found so valuable, and my volunteer role with the Charity is the perfect fit.

What have you most enjoyed most about getting involved with The Charity?

I’ve been really impressed by the friendly and highly professional way the Support team welcomed me into their group, with extensive training and ongoing digital and emotional support.

I’m loving being part of the Charity and the support team, and it gives me huge pride and satisfaction having the ability to help others. I hope that my personal experience of having brain tumour treatment helps me provide even more enriched support to others impacted directly or indirectly.

Suki’s story

What do you do as a Twilight Walk Champion Volunteer?
My role is all about spreading awareness about this amazing event, informing and encouraging people to take part. Whether that’s by social media or in person, I tell everyone about it! The latest people signed up are three ladies from my exercise class!

Why did you start volunteering?

My son Raj was diagnosed with a brain tumour in 2013 and he sadly passed away this April. I wanted to do something positive in my spare time. It can be difficult to keep asking people to part with their cash but getting them to join a fantastic event is easier.

What do you enjoy most about your role with The Charity?

Everyone at the charity is really friendly. It’s a great cause and I can really trust the way the charity works. It’s small and personal, which makes a big difference to me.

What is it about The Twilight Walk that makes you want to promote it in your area?

It really is a great event, I’ve seen it grow over the years and encouraging people to come and spend time with family and friends for a great time is a no brainer.

Andrew’s story

Tell us about your role as a volunteer

I volunteer in the head office at The Brain Tumour Charity every Monday and Wednesday morning. I help with orders from the shop or for fundraising, and help get them sent out.

What made you decide to volunteer?

I had passed The Charity before as I live in the area, but it wasn’t until I was diagnosed with a brain tumour, and I was getting ready to retire, that I thought about volunteering. My son was actually the one who really encouraged me to do it. 

I thought it was an obvious place to volunteer. And by volunteering in the head office it was also like a continuation of the work I’d been doing as I was working in an office before, so it was familiar to me. Plus, all the staff at The Brain Tumour Charity are so wonderful, it was a pleasure to come down here.

So, that was it, I started volunteering in 2014 – that was five years ago now.

What’s been your favourite memory of volunteering?

Honestly, it’s all been good. But one memory is my first The Twilight Walk I did. I got absolutely soaked. I was a marshal at the end of the long mile in Windsor and it just poured that night, but it was still great!

What have you found most fulfilling about volunteering?

I just enjoy being down here and being part of the team. It’s knowing you’re doing something useful and being part of a team working towards defeating brain tumours, and helping to cure them – it’s so fulfilling.

What would you say to others who’d like to volunteer?

Come and give it a try. I’ve enjoyed it and the staff here are very friendly and helpful.

Angela’s story

What do you do as a volunteer in the community?

I am a Community Volunteer for The Brain Tumour Charity in North East England. This means that I go along to events or fundraisers that people have set up to support the charity, so that I can thank them on behalf of the charity for all that they’ve done. I also give talks about HeadSmart to community groups, so that I can raise awareness of the signs and symptoms of brain tumours in children and young people within my local area.

Why did you start volunteering in this way?

Most people I meet have a very personal reason for fundraising. I aim to understand their story and help them to know they’re not alone, that the charity has a network of people all over the country that they can turn to for advice and support if or when they need it.

At the same time, as a person with a brain tumour myself who regularly uses the charity’s services, I hope that it feels meaningful to those who’ve taken the time to fundraise to have someone thank them first-hand, and for them to know that the money they are raising helps people in their local area. It’s also very important to me to raise awareness of childhood or teenage brain tumour symptoms; as I myself displayed some of the symptoms on HeadSmart cards in my teenage years and could potentially have been diagnosed earlier. I think that the HeadSmart initiative’s aim to reduce diagnosis times to under 4 weeks is vital in saving more lives and I’m proud to play my part in making that happen.

What do you enjoy most about getting involved with The Charity?

I most enjoy meeting like-minded people who are all united in raising money for this cause, even though they are each so wildly different from one another: from call centres to high street shops, church groups to rock band nights. I never quite know what’s coming next when anyone from the charity asks, “Angela, we have a group of people we’d like you to meet…” I’m excited about where my volunteer role might take me next, and even moreso about the people I’ll meet along the way.

We’re raising the benchmark

We’ve been recognised as Charity of the Year 2018 for our pioneering approach, innovative research solutions and, above all, our community-centred approach to everything we do.