Who is Brainstrust?
Brainstrust is a charity that helps people living with a brain tumour. They know that when you hear the words “you have a brain tumour”, you need support from people who not only understand the fear, confusion and isolation but who can empower and resource you to overcome it.
They provide personalised 24/7 support from the point of diagnosis and build resources that help people with a brain tumour to become stronger. I had the pleasure of interviewing Dr Helen Bulbeck and Will Jones from Brainstrust on my podcast.
I asked Helen to share her connection with Brainstrust and this is her story:
Who is Dr Helen Bulbeck?
Dr Helen Bulbeck, one of the Founders and Director of Brainstrust explained her reason for setting up Brainstrust. It all started in in 2004 her daughter Meg who was 18 at the time was diagnosed with a brain tumour.
“My daughter Meg was in hospital following a possible seizure”
Helen recollected how A and E had phoned her up to say her daughter Meg was in hospital following a possible seizure. To Helen’s surprise, this was not the first time Meg had had a seizure. She had not told anyone – she just didn’t want to worry her mum. Helen and her husband headed to the hospital and Helen had thoughts running through her head wondering if Meg’s drink had been drugged while she had been out the night before.
“Helen remembers that she was in absolute shock and utterly speechless”
It took a few weeks before the doctors could diagnose Meg. Sadly, it was a brain tumour. They had told them that the tumour was a grade 2. Helen remembers that she was in absolute shock and utterly speechless. They had no idea where to find support because, back then, there wasn’t any.
They could see there was some research being worked on but no engagement and support for how they felt and what they could find that would help Meg. Helen felt like they were in a black hole and really struggling.
“The cost for the operation in Boston was over £35,000, they raised £70,000 in fundraising”
After doing their own research, they were told there was a treatment available in America, and if they could raise funds, they could take Meg over to Boston and be treated. The cost for the operation in Boston was over £35,000. Meg and her family were able to put a fundraiser together through Meg’s 6th form college and were looking to raise £20,000. They had 18 months to raise funds before Meg needed to go for the treatment and amazingly and miraculously people raised £70,000.
“They still had £35,000 left. They felt Meg’s story was a very positive story, so they decided to put the rest of the funds into setting up a trust to help other people”
Meg had her operation, and it was a success. They still had £35,000 left. They felt Meg’s story was a very positive story, so they decided to put the rest of the funds into setting up a trust to help other people and make sure they knew where to find support. They didn’t want people to feel as lost as they had felt the day, they were told Meg had a brain tumour.
And so Brainstrust was born. It quickly became a place that as Helen had hoped people used as the first port of call to direct people towards the help and support, they needed. They started setting up meetups around the U.K where patients, carers or family and friends could meet up and have a free meal and meet others who understood precisely what they were going through.
I had the pleasure of joining one of their meetups in London in 2012 and met Helen and Meg. It was fantastic. There were around 12 people there, all at different stages of diagnosis or recovery. At first, I was nervous as I hadn’t personally met anybody else in my position. I had connected with people on my websites, but I had not met anyone face to face at that point. The atmosphere was very relaxed and was at a time in the day where the restaurant was not too busy. I personally would not have been able to go to the event if it had been held at a noisy time of day.
“Helen said they would continue to add to the information available on the Brainstrust site and keep building up awareness”
I asked Helen what she hoped the future for Brainstrust was and asked her to tell us what they were working on other than the meetups and the website which is full of information. Helen said they would continue to add to the information available on the site and keep building up awareness.
They wanted to meet the needs of patients. One thing they knew was a very common problem was the overwhelming fatigue that people experienced and that controlled people’s lives, and so the charity had set up support groups for that. They wanted to listen to the public and meet their needs.
I had a brownie point as I had asked my Facebook page followers what they did to help with fatigue. There was so much feedback; Helen was able to put all that feedback towards the upcoming support group sessions that she was setting up.
I looked forward to following up on the work Brainstrust were doing and as a brain tumour survivor myself, I was so grateful for their dedication and the way that they were really listening to the patients’ needs.
In 2014 I had the pleasure of interviewing Helen and Will Jones from Brainstrust and talk about the charity and what they provide:
Interview with Dr Helen Bulbeck from Brainstrust
Interview with Will Jones from Brainstrust
My connection with Brainstrust:
Brainstrust have kindly asked me to join a few of their brain tumour campaigns and I am always happy to help:
The Brain Tumour Tissue Campaign: If there’s one thing that researchers need to find a cure for brain tumours, the cure we all want, it’s a sample of your brain tumour. (Claire Bullimore is a Campaign Patron for the Tissue Donation)
Brain tumour data highlights urgent unmet needs for people with non-malignant tumours: Recently released brain tumour data shows that 10% of people with a non-malignant brain tumour will die within the first year of being diagnosed. (Claire Bullimore is one of the case study examples)
Find out more about Brainstrust Support Groups from around the UK – JOIN ONE HERE
Brainstrust really helped me on my ‘A Brain Tumours Travel Tale’ Book Tour. They invited me to a few of their Meetup Groups.