Brainstrust Charity Support for Brain Tumour Patients: My Experience

Over the years, I have had the privilege of working with Brainstrust many times. Every collaboration has shown me why this charity is so respected in the brain tumour community. Their mission is simple but powerful: helping people feel less afraid, less alone, and more in control after a brain tumour diagnosis.

If you are looking for Brainstrust charity support, this post shares my interview with founder Helen Bulbeck, my own experiences with the charity, and why they continue to make such a difference.

How Brainstrust Began

Brainstrust was founded in 2006 by Helen and Peter Bulbeck after their daughter Meg was diagnosed with a brain tumour shortly before her 19th birthday.

Helen explained to me during our interview that when Meg was diagnosed, they struggled to find clear support, practical advice, or emotional guidance. While some organisations focused mainly on research funding, there was little available for families needing immediate help after diagnosis.

That experience inspired them to create a charity focused on supporting people directly.

Today, Brainstrust helps patients, carers and families across the UK.

What Brainstrust Charity Support Includes

One reason I often recommend Brainstrust charity support is because they understand the everyday reality of living with a brain tumour.

Their services include:

Personalised support for patients and carers
Practical guidance after diagnosis
Coaching and wellbeing support
Peer support and community meetups
Resources for treatment and recovery
Caregiver support
A 24/7 helpline
Online support tools

This kind of help can make an enormous difference when life feels uncertain.

Watch Dr Helen Bulbeck talk about Brainstrust and about how Brainstrust started in full in the Aunty M Brain Tumours Talk Show interview below, or keep reading for the written version

My Experience Attending a Brainstrust Meetup

I attended a Brainstrust meetup in London and found it incredibly welcoming.

People there were at many different stages of their journeys. Some had only recently been diagnosed. Others were recovering from surgery or treatment. Some were years on from diagnosis.

I remember feeling nervous before attending, but everyone was friendly and supportive. There was no pressure to talk about tumours or treatment. You could simply be there, meet people who understood, and feel less alone.

That is something Brainstrust does brilliantly.

Why Brainstrust Matters to the Brain Tumour Community

A brain tumour diagnosis affects every part of life. It can bring fear, fatigue, uncertainty and isolation.

Helen and I also discussed fatigue during our interview, something many of us continue to struggle with years later. It is often misunderstood, yet it can have a huge impact on quality of life.

Brainstrust recognises these ongoing challenges and works to ensure patients’ voices are heard in research, healthcare and support services.

They focus not only on treatment but also on life after diagnosis.

My Collaborations with Brainstrust

Over the years, I have been proud to support and collaborate with Brainstrust in many ways, including:

Interviewing Helen Bulbeck
Attending Brainstrust events and meetups
Sharing their resources with others
Supporting awareness campaigns
Highlighting their work through Aunty M Brain Tumours Talk Show
Discussing fatigue and patient experiences
Promoting fundraising events such as Wear Grey For A Day

Every time I work with them, I see the genuine care they have for the brain tumour community.

Other Campaigns:

The Brain Tumour Tissue Campaign

The story behind the data – non-malignant brain tumours (NMBTs). (By sharing her story, Claire has helped us to shed light on the lack of public understanding of the impact that these tumours have, and the need for better, more appropriately stratified support for those with a non-malignant brain tumour).