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Volunteers’ week: The importance of our community’s voice

This Volunteers’ Week, we’re spotlighting some of our amazing Involvement Volunteers and giving them the opportunity to share what volunteering means to them!

A wall full of notes written by people in the brain tumour community at The Twilight Walk - a moving reflection of the importance of Volunteers' Week

Emma Lane – Four reflections from a Young Ambassador

After my partner, Matt, was diagnosed with a brain tumour, we were determined to make the best of our circumstances and find things to look forward to! While Matt built momentum cycling for charity, I joined 20 other young people (and the wider volunteer team!) to become a Young Ambassador for The Brain Tumour Charity.
Volunteers are fundamental to charities’ missions and the fantastic work they achieve. At The Brain Tumour Charity, we have an incredible 1,000 volunteers – and counting! So while every week is ‘volunteers’ week’ at The Charity, Volunteers’ Week specifically offers the opportunity to pause, reflect and share gratitude on what being a volunteer means for us.
Here are my top four reflections:

1. Being part of the volunteer community

By sharing our unique experiences as Young Ambassadors, we’ll be using our voices to raise awareness and fundraise for The Brain Tumour Charity. In just a short period, we’ve raised over £10,000 at the time of writing! To follow our progress, visit our Just Giving page.

As well as the Young Ambassador team, knowing that I am a part of the wider team at The Charity gives me a shared sense of purpose. We’re all here in the same boat, and while I really wish that none of us were in this boat at all, I’m grateful that we have found each other since we are here.

2. Opportunities to learn through volunteering

Emma, Charlie and Matt in cycling gear with their bikes, smiling at the camera
Matt on the right with his friend Charlie, after completing the Surrey Hills Classic long route in preparation for the London-Essex 100. I completed the shorter route! Photo by Daniel Seago Photography at the UK Cycling Events sportive.

As well as our unique experiences, all of us volunteers have opportunities to combine our skills and learn from each other. Our group chat is like a pinball machine of ideas, experiences, questions and wins to celebrate together!

Getting involved with fundraising, championing The Charity’s work, supporting at events and sharing our experiences will all offer the chance to develop and learn new skills such as public speaking and marketing. 

3. Volunteering to support the work of The Brain Tumour Charity

My partner Matt and I were introduced to The Charity by a doctor at the point of Matt’s diagnosis, but this unfortunately is not the case for everyone. The guides provided by The Charity were hugely helpful, presenting information in a useful and kind way as we attempted to avoid the dreaded Google!

Before volunteering, I knew I had to do something to help. From contemplating PhDs to considering a marathon, I came across the Young Ambassador scheme in an email. It seemed like the ideal opportunity to get involved! Having this opportunity to know that I am able to do some good, plus support Matt and The Charity is invaluable. This leads me to my final reflection…

4. Leaning into hope

Quite honestly, the world can be scary. When I was 21, I lost my dad suddenly and our lives changed forever. Again now, our lives have changed again upon Matt’s brain tumour diagnosis. It can be incredibly difficult to find and lean into hope, but I have found it essential to seek out.

This year, Matt signed up for the London-Essex 100, which took place six months and two days from his surgery! I am in total awe of him channelling his focus and determination into a personal challenge and raising over £4,000 for The Brain Tumour Charity.

My own way of focus (besides snack provisions and very slow cycling behind) is volunteering. Knowing that I am supporting in my own small way alongside dedicated volunteers, staff and researchers paving the way for real progress fills me with hope. 

Hope for support of the people that need it. Hope to reduce the harm of brain tumours. Hope for a cure.

About the author: Emma Lane

After Emma’s partner Matt was diagnosed with a brain tumour, she is determined to make the best of our circumstances and find things to look forward to! Whilst Matt built momentum cycling for charity, Emma became a Young Ambassador volunteer to support in her own way.

Manjari Dongre – Reflections from an Involvement Champion

My story and what makes me want to volunteer

The Wall at The Twilight Walk London, where walkers can share why they are taking part.
The Wall at The Twilight Walk London, where walkers can share why they are taking part.

I was diagnosed with a meningioma in 2011 and was monitored every two years, then every year. Eventually, my consultant told me I would require surgery in the next couple of months. I remember coming out of the appointment in a daze – not scared but blank.

I had my surgery, which went well, in September 2019. I came home after a week, and then the real journey began. While the wound healed, I had a lot of everyday struggles.

I needed help climbing up and down the stairs – I couldn’t decide which foot to put first. I remember once when I was walking in my patio, there was a hose in front of me. I stood there for a few seconds not knowing what to do to cross over that hose, I felt so lost. I couldn’t cross a road for the longest time – I used to get petrified if a car drove past me on the road or someone walked past me. I used to feel as if I was going to get hurt.

Once, when I looked at myself in the mirror after washing my hair and saw my scar, it hit me that things would never be the same and I burst into tears.

I still struggle with fatigue and headaches. I haven’t been able to go back to teaching children with dyslexia, which is my passion, since I still can’t talk for a long time without feeling tired. There are so many everyday things that I struggle to do.

What volunteering means to me

Deciding to volunteer for The Charity and becoming part of the Involvement Champions is definitely the best thing I’ve done. The Charity is doing such an amazing work, driving tirelessly towards early diagnosis, better treatment and care.

I’ve been involved in a few things since I started volunteering, doing The Twilight Walk to raise funds, participating in research surveys to feed back on lay reviews, and telling people about The Charity.

I think being part of a community where you can share your thoughts and journey, along with your joys and difficult moments, is such a special feeling. Knowing someone is there to support is so reassuring.  

I started volunteering thinking I wanted to make this difficult journey for others that little bit easier. But I also know how much I’ve gained in return. I look forward to our monthly meetings where we all share what we have been doing and our experiences. Being a part of such a lovely community is a wonderful feeling.

My role as an involvement champion will end next year. But I hope I will get a chance to continue being a part of this wonderful charity.

A volunteer for The Brain Tumour Charity stands with two staff members at The Twilight Walk
About the author: Manjari Dongre

Avid reader, enthusiastic gardener, passionate traveller, adventurous cook and happy homemaker. Also, a qualified teacher for children with dyslexia, waiting to go back to teaching as soon as possible.

Melissa Skinner – Reflections from an Involvement Champion

Melissa, a volunteer for The Brain Tumour Charity, smiles at the camera with her husband and child

Hi, my name’s Melissa. I volunteer as an Involvement Champion with the Brain Tumour Charity.

Before volunteering, I hadn’t met anyone else in the brain tumour community, and now I have a safe space every month where I can chat to others in a similar situation, and not feel that I have to be guarded or hold anything back.

Since starting, I’ve taken part in focus groups, fed back on projects, shared my experiences at meetings and events, but the most interesting event I have attended was a recent drop-in day at Parliament for politicians to find out more about the Charity’s National Brain Tumour Strategy petition. I was able to meet MPs, talk about my situation, and really advocate for all those impacted by brain tumours. It was an amazing experience.

I’m looking forward to continuing in my role as Involvement Champion, and all the opportunities it brings!

About the author: Melissa Skinner

Melissa is married to Matt, who was diagnosed with two brain tumours in 2018 and has been immersed in the brain tumour world since then. After one brain tumour progressed in 2020, Matt’s been stable since 2022.

Gemma Ford – What can you continue to achieve as a volunteer?

A group of Young Ambassadors for The Brain Tumour Charity wave with their arms in the air. Among them is Gemma, who shared her story during Volunteers' Week

To summarise being a volunteer with The Brain Tumour Charity in one word – incredible. I feel part of such an inspiring community, and I love being able to give back to a charity that has given me so much.

I’ve volunteered with The Brain Tumour Charity since September 2021. I started out on a two-year role as a Young Ambassador (2021 – 2023), and I am now a Young Ambassador Champion and Involvement Champion

I wanted to get involved and give back to The Charity as my mum was diagnosed with a glioblastoma in February 2020 and passed away just three months later. Being an only child, this was a very isolating time and I was really keen to be part of The Brain Tumour Charity’s community. This is when I decided to apply to be on the two-year Young Ambassador programme.

Being a Young Ambassador was an incredible experience for me, and it’s fantastic that The Charity runs this programme. It’s been wonderful to connect with others who’ve gone through similar experiences. I’ve met some amazing people and made friends for life. 

There are so many opportunities to get involved, and the flexible nature of the programme means each Young Ambassador’s experience can be completely different. I have personally loved contributing to and influencing The Charity’s policy work. In March 2023, I had the opportunity to attend a drop-in session at Parliament where I spoke with MPs about the Better Safe Than Tumour campaign. Being able to raise awareness of The Charity’s work among MPs was a really positive experience. More recently, in April 2024,  I was able to be with The Charity outside Parliament as they handed in their letter calling for a National Brain Tumour Strategy. I felt powerless when my mum became ill, so it truly feels empowering to help shape The Charity’s policy work while hopefully making a positive impact for those affected by a brain tumour.

Volunteer Gemma sits at a table with three other Young Ambassadors for The Brain Tumour Charity

Now my time as a Young Ambassador has ended, I’ve become a Young Ambassador Champion, supporting the next cohort as they embark on their two-year programme. I’ve really enjoyed volunteering for The Charity in this way, expanding my network in The Charity’s community. In April 2024, I had the privilege of attending the new cohort’s induction. Here, I was able to support them and run a session to help the cohort come up with their group agreement, outlining their aspirations and objectives for the programme. I’m really excited to see what they go onto achieve.

Looking forward, there’s some really exciting work happening at The Charity, especially with the recent launch of the Living Longer and Better strategy. I hope I can continue to make my mark and shape The Charity’s work however I can, while further connecting with The Charity’s volunteer community. I’m extremely grateful for The Brain Tumour Charity; they’ve helped me with my grief massively and this is due to the incredible time, effort and value they give to their volunteers.

About the author: Gemma Ford

After her Mum passed away from a glioblastoma brain tumour, Gemma became an active member of The Brain Tumour Charity community as a Young Ambassador and now Involvement Champion. She is keen to connect with others across the community and have a positive influence on The Charity’s work.