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.
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.
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?
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 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.
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.
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.
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.
What made you decide to support The Charity?
Our involvement with the charity began after my mother’s death in 2016. Having lost both my parents to Brain Tumours in little more than 5 years, I chose The Brain Tumour Charity as one of the charities to benefit from donations at her funeral. A little over a month after her death, my daughter Emma and I took part in The Twilight walk in Windsor again raising some more funds for the charity, despite a 10k walk being of little challenge to either of us. Six months later Emma took part in her first half marathon in Bath again fundraising for the charity, I went along to support her and this was my first experience at a cheer point with the Brain Tumour Charity.
Living near to Bath I also volunteer at the Bath Half Marathon. Working full time and also a regular volunteer with Girl guiding these are roles that currently fit in with my life, although I know that when I have more time available, I will definitely consider other volunteer opportunities within the charity.
We are also passionate about creating awareness of the charity and although not fundraising take part in various events wearing our Brain Tumour Charity tops – this year we have taken part in the London Vitality 10k, and along with my husband Prudential Ride London and Emma The Royal Parks half marathon. When taking part in an event you really do appreciate the great support of the cheer points along the route!
What do you enjoy about volunteering?
This year volunteering has become more of a family affair with my son Ben joining the cheer squad in Kingston when we did Ride London and my husband Keith volunteering as a photographer for the Royal Parks Half Marathon.
Volunteering with the charity is like being part of a big family, despite it being one that we would all rather not be part of; but all working towards one aim “a world where brain tumours are defeated”.
What do you do as a Twilight Walk Champion Volunteer?
My role is all about speeding 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!
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.
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 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.
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.
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.