took
One man and his boat: meet Jack, the solo rower who on
Brain tumour support 24/7. Call 01983 292 405 or email www.brainstrust.org.ukhello@brainstrust.org.uk ISSUE 13 SEPTEMBER 2022 THE MAGAZINE FROM brainstrust – the brain cancer people Progress on our mission to help people with a brain tumour live the life they wantInside this issue: l Read inspiring stories from the community l Catch up with some of our fundraisersincredible l Find out more about our support l Explore the latest in people-first brain tumour research
the Atlantic for brainstrust
Will Jones Chief Executive, brainstrust
PRIME one year on. We reflect on the amazing impact of PRIME a year since its establishment.
Our strategy, developed with you, and delivered with your support, is helping us achieve our mission – we are here for a world where people with a brain tumour are involved, resourced, supported, confident and connected. They are living the life they want, because they are people first, and patients second.
through our work in the following areas: coaching and support building clinicalregionalinformationcommunitiesandeducationinsightandrelevanceengagement,developmentandnetworkbuildingengagingpeopleinresearch which is only possible with: effective fundraising efficient marketing and promotion administrative support good governance
But we reserve a special thank you, for Youyou.are the community that inspires us. You energise us; you educate us; and you keep us focused. You also generate the vital funds and awareness that fuel our mission and our progress – thank you.
A world where people with a brain tumour are involved, resourced, supported, confident and connected. They are living the life they want, because they are people first and patients second.
l As a person you are more resourceful, more proactive and more confident in the face of challenges.
In issue 12, I wrote about our commitment to reach more people, and to reach them sooner. A year later I can happily reflect on the progress we’ve made. Our team is now welcoming over 100 people each month to our support. And these people are staying with us, receiving coaching and counselling, accessing our library of accredited resources and joining in with our bustling calendar of workshops and events. This is an increase of 77% on last year’s workload during the same three-month period from April to June. We do this with a small team, and we are working hard to reach people at diagnosis – nearly everyone who calls, emails or attends an event tells us that they wish they had found us sooner on their journey with a brain tumour.
6–7
Jenny talks to us about how art has helped her on her journey.
the stronger we are, the more people we can help – a virtuous circle. Our increasing impact in the face of continuing growth is testament to this, and full credit to our small team for powering on.
20–21
Wear Grey’s 10th anniversary. Are you ready to turn up the volume for 10 years of Wear Grey? Here’s how you can get involved.
Jack’s record-breaking row. We talk to Jack about his 111-day row for brainstrust.
Helen talks about life since her diagnosis and finding brainstrust.
Wesecond.thrive
Our First,strategy:wearepeople
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Bringing together insights about people’s lives beyond the brain tumour clinics, taking a broader look at the resources around them, understanding their behaviours and looking for opportunities, means, together, we can design new solutions for people who are living with a brain tumour.
Jenny’s story.
To get to where we are today, we asked the experts what they needed – we worked with you, our community, to understand what matters most. We embarked on our current strategy, ‘First, we are people’, in April 2019. This puts a laser focus on the human, practical and cultural contexts in which people find themselves following a brain tumour diagnosis.
None of us is as smart as all of us, and it is your belief in us, in our mission, in our vision that everybody who hears the words ‘you have a brain tumour’ can live their best possible life, that drives us. This is because with us you are a person first, and a patient
Get to know our brainstrust peer supporters.
help people overcome fear help people to engage with their challenges and care eliminate isolation
Read on for all of this and much more!
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People-first research
Greg’s 371-day swim. We catch up with last year’s cover star, Greg, as he finishes his wild swimming challenge.
improve knowledge and understanding
16
10–11
Run, Row, Ride. It’s back for 2022 and here’s how you can get involved.
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ESPITE THIS, here in our Logbook, we hope you can find solace, focus and hope. You will learn how brainstrust’s clear strategy, strong community and single-minded focus on helping people thrive provide drive and invigoration for our tireless team and for the incredible brain tumour community.
Follow the Seagulls 2022. We reflect on this year’s walks and introduce our new trek in Brighton.
Molecular testing of a brain tumour. How testing opens new options for treatment.
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Your stories
l People look at opportunities; patients focus on problems.
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l You spend more time being a person than you do being a patient.
Cover story
Welcome to the 13th brainstrust Logbook
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Fundraising fun
To make this happen, we aim to:
in a world where we are a person before we are seen as a patient. We thrive where we get to do the things that people want to do as opposed to those things that patients have to do.
l Emotions and values drive your behaviour, not just clinicians. What matters to you is more important than what’s the matter with you.
Our goal
You told us:
Finding joy again.
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For all of us, the headwinds are still blowing with the rolling uncertainties of a lingering pandemic, political turmoil, the rising cost of living and a devastating war in Europe.
First, we are people. In our support, in our research, in our campaigning and in our fundraising, that’s our vision, and it’s the mission you are powering.
D
Contents
Not being able to access information in hospital has been a massive setback for the brain tumour community during the pandemic, but now we are confident that the tide is turning. Being able to meet with the clinical community again, face to face, is vital here. We meet to share our work and collaborate on referral pathways. We also know that we must increase capacity so that we can get more resources into the hands of more people sooner on their journeys. We also know that brainstrust thrives when our community thrives, and
As a result of my brain tumour, I have single-sided hearing loss, tinnitus,
Every day, 30 people receive a brain tumour diagnosis in the UK, and too many suffer fear, isolation and a loss of control over their lives without the tools and support to cope with the situation at hand.
Progress trackers
We sent out 404 brain boxes. 5,160 resources downloadedwerefromourwebsite.
I would like the world to know that life with a brain tumour is hard. It’s a roller coaster ride full of immense lows, highs and often long waits!
Caregiver Patient
I! I’M Helen Pritchard. I am 51 and married with two boys, aged 21 and 15, and I live in Staffordshire. I love the outdoors and spending time in green spaces. In January 2020 I was diagnosed with an acoustic neuroma, and it was like the bottom had dropped out of my world. I felt sad, overwhelmed, angry, lonely and very confused.
fatigue, balance issues, dizziness, and nausea. All of this makes everyday living a huge effort, and I have had to relearn how to live my life. It now requires a lot of planning, pacing and resting!
W
Patient, about coaching, May 2022
of all cancers spread to the brain 40%
HEN YOU’RE diagnosed with a brain tumour, you’re thrown into a world of unknowns. You and your loved ones face the challenges of complex and nearly always harmful treatment, and a diagnosis that has an enormous impact on mental health, wellbeing and everyday life.
Our challenge
My first contact with brainstrust was when I got in touch to request a brain box. This is an amazing box packed with lots of useful information for anyone diagnosed with a brain tumour. My next step was to join some of the online workshops and Meetup groups. I was nervous at first, but I found it incredibly helpful to connect with others going through the same or a similar experience to myself. I have also received invaluable
‘I received coaching with Jodie, and it really helped me to reframe a few issues. It was really helpful, and I’m grateful that I was able to access the support when I needed it. Thank you, brainstrust.’
‘It feels like a nightmare I can’t wake up from.’
Patient
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More than thepeople80,000inUK are diagnosistumourwithlivingabrain
Our biggest impact has been helping people to ‘feel part of a community’.
‘Facing your own mortality is a big thing when you’ve got a young family.’
My advice for other people in my situation
For anyone newly diagnosed with a brain tumour, you’ve got to be prepared to advocate on your own behalf. This is your life and your body. Be prepared to seek and accept help from others. There is no failure in asking for or needing help and support. Know that relationships with others can and do change during and after diagnosis. But most importantly, remember to be kind to yourself.
coaching from Jodie, my regional support specialist.
I find it to be both exhausting and exhilarating. I guess the exhilarating part is due to the realisation that despite my diagnosis, there is still joy in living.
Finally, it isn’t all doom and gloom. Following my diagnosis, I have connected with some amazing charities, organisations, people and places. This is not the life that I wanted, but it is still good.
Our year in numbers In total, 2,339 people accessed our support last year.
brainstrust strives for a world in which all people with a brain tumour and their loved ones are involved, resourced, supported, confident and connected. That’s why the work we do matters, and why your support means so much.
‘I felt overwhelmed, lost, petrified and alone.’
The people we support are at the centre of our mission. We pay close attention to our impact, and we do all we can to improve the lives of people living with a brain tumour.
Our impact
On average, people have progressed 17% across the six indicators in our progress tracker, meaning they feel they are moving towards a less difficult position.
It is the commonmostform of cancer in people under 40
Less communityPartaloneofa On top of EngagedSupportedthingsResourcedwithclinicalcare Beneficiaries 0 20 40 60 80 100 120 140 160 180 197 Decreased Same Increased Less alone Part of ofOncommunityatopthings SupportedEngagedResourcedwithclinicalcareInitialLatest
H
What I want the world to know about life with a brain tumour
Finding joy again: Helen’s story
Finding brainstrust
Get to know our peer support volunteers
I was diagnosed with an epidermoid brain tumour back in 2012. I found the experience difficult to deal with, but thankfully, I had the support of my wife throughout the whole process. I am currently on a ‘watch and wait’ strategy with regular MRI scans. I thought sharing my experiences might help support someone else in similar circumstances.
Paul B
HEN YOUR child is diagnosed with a brain tumour, your entire world turns upside down. Little brainstrust is here to provide age-appropriate support to you and your family. To find out more about how we can support you and your family, head to littlebrainstrust.co.uk.
E MATCH our peer support volunteers with people in need of a listening ear, making sure that they each have a similar experience and diagnosis. They are an understanding presence in a time of confusion and fear. Peer support volunteers remind you that you are not alone and there are people you can turn to who will listen with non-judgemental compassion.
studying for a Masters in Global Health and love skiing, exploring, reading and crocheting.
I truly feel one of the lucky and privileged people in our community: now 11 years on from my initial diagnosis, with so many awesome people to be grateful for along the way (surgeons, oncologists, nurses, doctors, friends, family, charity volunteers, etc.) that if I can help someone else on their journey by sharing my thoughts and experiences, I’d be very honoured to do so. My key message is to stay strong and positive.
W
I’m available as someone outside your family to talk to, for non-judgemental conversations and support.
Di
Paul K
a craniotomy soon after. It wasn’t until the summer of 2019 that I discovered brainstrust and the invaluable support and advice on offer there.
‘Your little brain box arrived. What a phenomenal resource! I wish we had it a year ago when Eve was first diagnosed. We would have been so much more informed and better known what sort of questions we should be asking. The information is empowering and, I believe, will allow us to make better choices for Eve.’
worst-case scenarios, and I try to remember ‘Supposingthis:atree fell down, Pooh, when we were underneath it?’
diagnosed, Covid-19 was just hitting, so I had to find online support and found that one of the best things for me was making friendships with others going through a similar story to me – having someone else who understands that scan week is hard, and results week is even harder. Just little messages, a video or phone call, a card can make the biggest difference.
Also, I love to talk to people! So if you’re just feeling a little bit lost or lonely, I would love to get to know you. To end with, when I was first diagnosed, I kept thinking about the
Ani
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Eve
The little brain box is a must-have support toolkit for families with a child or teenager who has a brain tumour, containing essential resources to support and provide information for children and parents and the rest of the family. You can order yours on the little brainstrust website.
I would not be where I am now without the hours of life coaching, webinars and virtual meetings that helped me on this journey. Along the way, I met others who were also being supported by brainstrust and who had been through similar experiences to me, and it was such a good feeling to know that there were others who understood how it is to be a brain tumour survivor. I’m now at a point where I feel able to and want to support others, the way others supported me when I needed it.
I would love to chat with anyone who is struggling with something similar (like a family member with a recent diagnosis), as although friends try their best, I know that sometimes they can’t fully understand how it feels to have a parent go through this.
I am keen to help anyone who has found themselves in a similar position to mine; your whole life changes overnight, and you need to find a new Whenfuture.Iwas
When you hear the words ‘you have a brain tumour’, it can mark the start of an isolating and lonely journey. Having someone who understands what it’s like to receive that diagnosis, or to support a loved one throughout their journey, can be a lifeline in dark times. And that’s what our peer support volunteers do.
I remember when my child was diagnosed as if it was yesterday: harrowing. I was terrified. It was overwhelming. Today I know so much more. I simply wish to support others.
We’re so grateful to all our wonderful volunteers who give their time to support the brain tumour community – to you, we extend the most heartfelt thank-you.
‘Supposing it didn’t,’ said Pooh after careful thought.
Piglet was comforted by this.
If you would like to talk to one of our peer support volunteers, or to be a peer support volunteer yourself, please reach out to us on hello@brainstrust.org.uk.
I was diagnosed in Feb 2020, out of the blue, with a grade 4 glioblastoma. Since then, I have had a biopsy, six weeks of radiotherapy and chemotherapy, followed by six months of chemotherapy. Now I am on my second round of chemotherapy, following a 15-month stable period.
Jill I was diagnosed with a meningioma in November 2018 and underwent
Our peer support volunteers are a first-rate example of the strength of the brain tumour community and the importance of feeling listened to. But, instead of us telling you about the power of the community, we’ve asked people why they’ve chosen to volunteer as a peer supporter – so they can show you.
W
Hi! I’m Eve, from Cornwall, now living in Oslo, Norway. I am 23, and my lovely mum was diagnosed with a GBM4 just over two years ago. She has had initial surgery for diagnosis, radiotherapy, and is on her second round of chemo now. I’m currently
I’m Di. I am 55, and I live in Cornwall.
When Mo picked up the phone, he was really struggling with the skews that his glioblastoma diagnosis had brought to the family dynamic. His wife and main caregiver, Alisha, was feeling the strain; she wanted to keep her independence through work, but having to physically care for Mo, due to his mobility issues, and managing his emotions was taking its toll. In addition, their young adult son was in denial about his dad’s diagnosis and refused to talk about it.
Finding an anchor
Deirdre has had coaching around setting boundaries with other people and managing other people’s perceptions of her diagnosis. She understands that she can’t change them, but she can change the way she reacts to them. She now feels it is okay to ask for help, to recognise when she needs it, and is better able to manage people’s expectations of her. She has become part of our peer support programme.
Through coaching, we have helped Maria identify what her priorities are,
A orproblemachallenge?
Two brothers picked up the phone. Their mother has a glioblastoma. She is experiencing behaviour and personality changes and is displaying combative behaviour. They live on a farm in Wales, so they are isolated. They didn’t want us to call them back in case their mother answered.
Stuart was diagnosed with a lowgrade glioma, which, following an awake craniotomy, was rediagnosed as an anaplastic astrocytoma. The surgery left a legacy of epilepsy and reduced mobility. He has two sons, one aged two and one four. The youngest was just eight weeks old at diagnosis. Stuart’s wife, Maria, is self-employed and has stopped work for the time being, as Stuart was the carer for the children, so she is dealing with not only the diagnosis and the potential loss of her husband but also the loss of her job and her independence.
changes and signposted them to some key strategies they could use in the short term. We also suggested that they contact their mother’s GP and ask for help. A week later we followed up with an email to see how things were. They had used two key strategies from the resource, had spoken with the GP, who had identified some additional support local to them, and they had signed up to attend our next online workshop on managing behaviour and personality change. Most importantly, they understand now that the changes in their mother are not personal to them but are related to her brain tumour. This has enabled them to feel more emotionally at ease with the situation.
and together we have built a timeline of key actions. We talked through where she wants to be in six months and what she needs to do to get there, as well as the conversations that she needs to have. We helped her to build a team around her so that she has a supportive network, which includes support for the boys from our children and families support specialist.
We packaged up a brain box, which included our resource on how to manage behaviour and personality
People pick up the phone or email us with all kinds of challenges. We frame them as challenges, rather than problems. Problems are heavyweight, close thinking down and hinder progress. Challenges, on the other hand, create focus and are a call to action. They have an energy about them, which, if channelled in the right way, can create growth.
no breach of confidentiality. The goal agreed by the family was to be able to have better conversations. Each member was sent our ‘How to have a difficult conversation’ resource to read and to identify what they could each contribute to improve the atmosphere at home. Issus being explored are how to talk about emotions, how to express emotion and what good support for each other looks like.
If you need support reframing problems, then just hello@brainstrust.org.ukemail.
Deirdre, who has a meningioma, has had to make significant lifestyle changes to accommodate the high symptom burden she now has. She has had to stop work and has lost her driving licence. She has found that friends and family don’t understand her situation. They are dismissive and don’t make allowances for her health, expecting her to do the things she used to do.
Feeling supported and less alone
Teresa had just given birth to her first baby, a little girl. Six weeks later she was diagnosed with a glioblastoma. When Teresa picked up the phone to us, she was newly diagnosed, frightened and overwhelmed and asked for counselling support.
Being on top of things
HROUGH OUR coaching approach, we help people to build resilience and be better placed to deal with the challenges that living with a brain tumour brings. Coaching brings us closer to the community and gives us real insights into what can at times seem like insurmountable problems. Here is a sample of some of the challenges that people bring to the coaching conversation, and the ways that people found to address them.
After exploring her core values and working out what was important to her at that moment with her support specialist, she decided that she didn’t want counselling, that she was actually okay and wanted to spend as much time as she could focusing on her new daughter.
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Having conversationsbetter
Each member of the family entered into a coaching relationship, each with a different member of the brainstrust support team, so that there was no conflict of interest and
Setting boundarieshealthy
How we help people reframe their problems
T
Jack is greeted in Florida
As far as challenges go, this one was pretty huge. How did it feel in that moment you set off in December, just knowing you would be alone at sea for at least 100 days?
I was a bit unsteady on the old feet. That lasted two days, really. I kept bumping into things!
On the day we’re talking, you’ve currently raised £66,000. How does it feel to see how many people have donated and how generous they have been?
Jack’s first meal back on dry land
I thought I might raise £10,000. To smash your target by £16,000 is amazing! There are still a few things left to go, so getting it even higher, that would be awesome!
Who doesn’t love finding a surprise chocolate bar?
For all the challenges and obstacles, there must have been some amazing moments too. What are your favourite memories from being on the boat?
For all the amazing moments during the row, it must have felt incredible to finally get to Florida. After 111 days at sea, what did that landing feel like?
Jack with his boat companion, Wilson
I’d like to do a pair crossing, or maybe a four. I wouldn’t say I’m done with rowing. At least with a team, it wouldn’t take 111 days!
Can you tell our readers a bit about why you decided to take on the row, and why you chose to fundraise for brainstrust?
I decided to do the row as a challenge, to challenge myself and to see if it was possible, as obviously no one had done that route before. And also, my grandad died of a brain tumour in 2007, and I thought it was a great way to raise money and awareness for brain tumours.
I was definitely like, ‘It’s certainly very real now.’ There was excitement, nerves, but also a lot of relief. The row was two years in the making, and during the seven months running up to the start, I was training specifically for the row six days a week. There was a lot of preparation involved, so it was a relief to just get going.
I saw sharks, marlins, whales, dolphins and loads of fish – which was all really cool! Oh, and then once, I found a loose flapjack in the boat. All my snacks were in separate containers for each day. Then this flapjack was in another container. I was buzzing. I also found a Dairy Milk chocolate bar as well. That was another great moment!
Seeing all my friends and family there, that was awesome. That’s what gets you through the tough days, thinking about friends and family.
Being at sea for all that time must have had its hairy moments. Are there any moments in particular that stand out as being tough or scary?
On 3 December 2021, Jack Jarvis set off from the south coast of Portugal to attempt a world-first row. He aimed to row across the Atlantic, completely solo, on a route never before attempted. The reason for this crazy undertaking? To raise money for brainstrust in memory of his grandad. After 111 days at sea, with 4,630 nautical miles covered, Jack returned to land on 24 March 2022. We caught up with Jack to ask him all about his experience.
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So, what’s next? Are the oars being retired for life, or are you planning on getting back on the water?
I broke my finger one day. That was pretty bad. It basically got caught round a line, so that was pretty hairy. I also almost capsized one evening, a big wave hit me on the beam, and that was again quite hairy. The thing with capsizes, though, is that they are over within seconds, so you panic, and then it’s ‘Oh, right, well, that happened. Better get back to rowing.’
Will Jones, CEO, brainstrust: ‘Jack has inspired us all at brainstrust and in the brain tumour community. He has given us resolve in our belief that if we lean in, keep working hard and look out for one another, every day lived with a brain tumour can be a day well lived.’
I used to think about my grandad too. At the end of the day, I volunteered to be there. I’d much rather be in my position than fighting a brain tumour for two years. What I did is easy in comparison. It’s all about perspective, you know. Did it take you a while to find your land legs again?
Photography (including front cover) courtesy of Nifty Communications.
It is an insane amount of money. To be fair, when I put the £50,000 target, I didn’t really think about it. I just thought, ‘Yeah, that would be nice.’ I didn’t ever think I would reach it.
Jack’s breakingrecord–row
Buy grey.
1–7 October 2022
Spread the word
T-shirt: £12.00
Get loud for 10 years of Wear Grey
OR 10 YEARS, we’ve worn grey to raise awareness of brain tumours and the impact they have on people’s lives. We’ve seen people from Canada to Vietnam get involved, with schools, hospital wards, offices, dog walkers and dogs all wearing grey for people with brain tumours.
As we get louder than ever about brain tumours, sharing your grey has never been more important. Make sure you post a photo or video on social media, telling the world why you are wearing grey – the louder the better! And don’t forget to use the hashtag
It’s time for change. It’s time to get loud about brain tumours.
But sadly, it remains the case that every day, 30 people in the UK are diagnosed with a brain tumour, and too many of them will have to face the road ahead without the support and information they need. It’s time for this to change. That’s why this year we’re turning up the volume and asking you to get loud about brain tumours for Wear Grey.
Grey is the internationally recognised colour for brain tumours, and we know that people find this a bit, well, dull. But grey doesn’t have to be this way. To raise more awareness and more funds than ever, this year we want to get loud about wearing grey. This year we’ve got to get loud about wearing grey.
We have limited edition 10th anniversary T-shirts available to buy in our online shop, alongside our grey T-shirts, hoodies, bracelets, hats and more. There’s something for everyone, so make sure to order your grey gear.
Post a picture or share a video of you in your grey attire, telling the world why you are wearing grey for the brain tumour community. And remember, the louder the better! Don’t forget to use the hashtag
It couldn’t be simpler to get involved in Wear Grey this year.
10th T-shirt:anniversary £20.00 Hoodie: £22.00 Beanie:
Share grey.
F
Wear Grey thrives because of the hard work and energy of Shaun Skinner
Wear Grey is 10. To mark this milestone, turn up the volume with us and get loud about brain tumours.
Shaun, from Herefordshire, believed passionately in raising awareness of the challenges that come with a diagnosis, and he believed that together we are stronger. He worked tirelessly, despite his own brain tumour diagnosis, to help others and raise awareness. We were devastated when Shaun died in 2017 but we are proud to have been tasked by Shaun to continue Wear Grey. All who knew Shaun now work to grow this event beyond Shaun’s wildest expectations. He started something incredible: changing the world for people who are lost, afraid and alone in the face of a brain tumour diagnosis.
If you want to go the extra mile for Wear Grey, why not host an event in your local community? You could put on a dance-a-thon, a sing-a-long, start a band or get the band back together! We’d love to hear all about your noisy fundraising ideas, and we will support you every step of the way, however you choose to make some noise. If you’re planning a fundraiser or would like to talk more about Wear Grey, get in touch with Steph at steph@brainstrust.org.uk
The aim of Wear Grey has always been to turn the world grey for brain tumours. By wearing grey, you’re showing the world that people living with a brain tumour matter, and they deserve the best support and information available.
We’re asking you to get as noisy as possible telling people why you’re wearing grey. Whether you’re shouting about it on social media, organising an event in your local community or taking on a noisy fundraising challenge, this year is all about being bold and making sure the world knows why grey matters.
Get loud locally
#WearGrey £10.00 £11.99 £1.00
Buff:
#WearGrey
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Wristband:
Wear grey.
Turn up the volume to 10
When you or someone close to you is diagnosed with a brain tumour, you may find yourself worrying about finances. You may be worried about reduced pay, running your business or having to make the decision to stop working. Being in this space can be overwhelming, especially when you are already dealing with so much. It is at these times that having the right support in place is transformative.
As well as all the events above, we also have our monthly tumour-specific groups and plenty more events to help you take control and thrive. Search for ‘brainstrust Eventbrite’ to access all our regular Meetups, coaching sessions and research events, or email hello@brainstrust.org.uk for more information.
Hypnotherapy webinar attendee
‘The content, the presentation, the value of others sharing their experiences all enabled me to gain further insight into how medical conditions can impact changes in behaviour and personality, and it was helpful in exploring useful strategies to support those people who are impacted.’
FinanceHows and benefits
‘I really enjoyed hearing everyone’s experiences and how recovery isn’t linear. It helped me massively to understand I may have to stop running 150 mph and slow it down.’
Dealing with overwhelm workshop Monday 10 October at 2.00pm
We are fortunate to offer our community webinars hosted by leading clinicians and researchers from the medical world. We strive to offer a wide range of the latest, most relevant topics requested by our community.
Brain tumour Know
E CONTINUE to offer a full calendar of brainstrust events online. Our events help you connect with others who understand and help you get the knowledge to be confident in your care and gain the skills to live the best life you can with a brain tumour.
Eric helps by:
Virtual brew Thursday 6 October at 4.00 p.m.
l discussing available benefits and financial support and assessing your eligibility to apply
Monthly virtual Meetups help you connect with a community who understands in an informal, welcoming setting.
Living with fatigue webinar attendee
Behaviour and personality change webinar attendee
Helping you navigate welfare and benefits
l signposting to relevant support services.
Thrive with good nutrition: the ketogenic diet and blood sugar Tuesday 13 September at 10.00 a.m.
Living with fatigue webinar attendee
Wednesday 7 September at 10.30 a.m.
Eric has vast experience and knowledge of the welfare benefits system and is passionate about giving people the support and guidance they need to navigate this complex and often very stressful process.
Here’s a selection of some of the events we’ve got coming up.
‘I found the webinar extremely helpful and informative. Gaining all the information from the professionals was definitely needed, but being with others in the same position was, for me, the biggest positive out of the time on the webinar.’
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‘I really enjoy the mix of the sessions provided by Louise, from the guided hypnotherapy journey, the practical skill-based information and the discussion element. I feel positive and energised afterwards. I have found coming to terms with a brain tumour extremely challenging. These sessions have genuinely allowed me to start to feel the joy of life again! Absolutely priceless.’
l providing coaching sessions prior to any medical assessments through DWP
W
Our finance and benefits Know How contains information about benefits that could support you and your family when one of you has a brain tumour.
run by Isle of Wight artist Maddy allow you to explore your creativity, find calm and reduce stress.
l supporting you through the application process for benefits such as PIP
E
Monthly coaching sessions led by our dedicated support specialists help you develop coping skills to deal with the challenges you’ve told us are prevalent for people living with a brain tumour.
ARLIER IN the year, we welcomed Eric to the brainstrust team as our volunteer welfare benefits adviser.
Eric has been amazing and so supportive. I wasn’t feeling well when he rang, and he arranged another phone call without any fuss and bother. He listened to everything I said and even filled out the form for me, so all I had to do was copy it over. I’m so grateful for his support and help. He is a lovely man. Thank you so much to all of you at brainstrust.
So far Eric’s specialist support has secured nearly £40,000 a year in welfare benefits payments for people in need.
The welfare and benefits advice service is brilliant. I really believe I would never have been awarded PIP without all your help and advice. I really hope that other people can get that help too. Thank you so much for everything you’ve done that has helped me to be awarded PIP.
If you would like to find out how Eric may be able to support you, get in touch with us by ushello@brainstrust.org.ukemailingorgiveacallon 01983 292 405.
Webinars to help you feel connected and in control
Virtual Meetup for family and friends Wednesday 26 October at 1.00 p.m.
Living well with a meningioma webinar with Catherine McBain Thursday 22 September at 2.00 p.m.
Art time workshop
Money worries
Information to help you feel more in control and better resourced about finance and benefits.
l exploring with you one-off grants for specific purposes, such as essential equipment
This Know How provides you with a framework to help you deal with money worries.
Want to hear about our events first? Sign up to our mailing list to receive all the latest updates and announcements about our events and more. Visit brainstrust.org. uk/contact-us and fill out our keeping-in-touch form to sign up.
Here are the different ways in which our virtual events programme can help you live better with a brain tumour:
Hypnotherapy sessions run by Louise Baker deal with key issues faced by our community and help you take control using hypnotherapy and Artneuroplasticity.timesessions
l supporting you through the mandatory reconsideration and appeals process for PIP
Having Eric’s support in completing my PIP application was incredibly helpful and helped to take a bit of the pressure away and make this process feel more manageable. I felt very comfortable speaking to Eric and felt that he really listened to me, and it very much felt like a collaborative effort between the two of us.
Download these Know Hows by visiting money-mattersbrainstrust.org.uk/.
Events to help you thrive with a brain tumour
PRIME one year on
Here’s why Jane wanted to get involved in Run, Row, Ride 2021:
When asked if she had a favourite moment from her Run, Row, Ride challenge, Jane admitted, ‘It is difficult
F
Are you a member of a gym or running club? Do you have a cycling crew or yoga collective, a hiking club, wild swimming group or rowing team?
Top formarkqualityawarded brainstrust information
Run, Row, Ride teams
Run, Row, Ride is back this November for its fifth year, and we need your help to make it the best year yet!
OR THOSE 30 people, the road ahead looks scary and uncertain. By taking on Run, Row, Ride, you’ll aim to raise £200 to help make sure those 30 people each day who are told ‘you have a brain tumour’ don’t have to face the road ahead alone.
Jodie Eveleigh, brainstrust support specialist and information lead, was instrumental in securing this accreditation. She says, ‘This demonstrates with authority that brainstrust’s health information is evidence-based, up to date and produced to the best possible standard, something that we pride ourselves on. We are really proud that we have been awarded this for our health information, which forms a big part of brainstrust’s support for people living with a brain tumour.’
In 2021, we created the Patient Research Involvement Movement (PRIME) to provide a service that would bridge the gap between the clinical community and patients and caregivers, with the aim of improving the quality of clinical research and its design.
researchers as our group of research partners expands. We will provide exceptional and effective patient involvement, and shape the trials and studies that can achieve meaningful change for our community. We are working in partnership with the charity Brain Tumour Research to grow this work.
To help us in our mission, consider joining PRIME as a research advocate by contacting Adam atSomeadam@brainstrust.org.uk.ofourPRIMEresearchpartners
Registration for this event is open now. For more information, please orfundraising@brainstrust.org.ukemailvisitourwebsite.
Since we launched Run, Row, Ride in 2019, our inspiring community has raised a grand total of £44,600 The question is, are you with us to make 2022 the biggest year yet?
Walk, run, row or ride, this flexible virtual event allows you to do it your way. Skip, step, swim, whatever works for you! However you choose to take part, your fundraising ensures that brainstrust can be here to help families feel less afraid, less alone and more in control.
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RUN, ROW, RIDE
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Take on 30 miles over 30 days, in support of the 30 people who are diagnosed with a brain tumour every day in the UK.
The studies we’ve supported include developing core outcome sets to better identify patient needs, altering standard care by introducing new cutting-edge technologies, and looking at how we can more efficiently get treatments out of the lab and to the patient, among many others. These studies could ultimately improve the quality of life for those living with a brain tumour today and in the Lookingfuture.forward, we will push the standard of patient and public involvement and grow our excellent community of researchprimed patients and caregivers. We will support more clinicians and
We are delighted to announce that we have been awarded PIF TICK accreditation, making brainstrust a ‘Trusted Information Creator’.
We’d love to hear from teams who are interested in taking part in Run, Row, Ride this November. Use your team spirit to make a real difference for the brain tumour community. Get in touch to introduce your team.
By raising £200, you’ll help to fund four hours of coaching with one of our dedicated support specialists. Our coaching conversations help people to cut through the overwhelm and focus on the things that matter most to them, so every person can live their best day every day.
Since its inception, PRIME has grown rapidly, achieving a great deal in the clinical research landscape. We have: recruited 50 research advocates, who lend their insights to researchers, helping to shape the trials and studies that will hopefully improve care for future patients, trained 7 research partners in how to deliver top-level patient and public involvement, signed over 400 people up to our weekly research updates, helping them become more aboutknowledgeablethefield.
‘I challenged myself to walk 30 miles in 30 days for brainstrust because they have played such a supportive role in my own journey and I wanted to support others that will join us on this particular journey. I explained to family and friends about the challenge and was surprised how many wanted to support and join me on my walks.’
to pick out a favourite walk, because each one has had its special moments, from my granddaughter splashing in puddles, to today’s walk with my 90-year-old father, or watching the sunset at Chidham, or the splendour of the South Downs.’
30 MILES, 30 DAYS, YOUR WAY
HE INTERNET is teeming information,withand it’s difficult to know what to trust. That’s why receiving our PIF TICK accreditation is such an important milestone in our mission. You can now come to brainstrust knowing the information we give you is up to date, evidence-based, jargon-free and produced to the best possible standard.
Not long ago, research was targeting one type of glioblastoma (GBM). We now know, from the molecular markers found in brain tumours, that there are many subsets of GBMs, and we also know that when a GBM recurs, it is not the same tumour as it was when first diagnosed. The reclassification of brain tumours by the World Health Organization in 2021 reflects the subtle changes that are happening.
What can we do with this information?
A molecular marker can be used to determine how well the brain tumour will respond to a particular treatment, how we think it is going to behave and what the prognosis is.
Why do we need this analysis?
Molecular marker – a biological molecule found in blood, other body fluids, or tissues that is a sign of a normal or abnormal process, or of a condition or disease. Also called ‘biomarker’ and ‘signature molecule’.
The issue in 2022 is to do with parity of access to molecular testing.
First, not every person is having the discussion with their neurosurgeon about preservation of their brain tumour tissue. The first priority for any surgeon is to get enough goodquality tissue that will enable a diagnosis to be made. Without this, it is hard to know which treatments will match the make-up of the tumour. Any good-quality tissue that is left over can be kept for research purposes (with consent) and can also be preserved for each individual to find other treatments that may be a match for their tumour. Traditionally, tissue has been saved in paraffin blocks, but there is the option in some centres to have tumour tissue frozen. There are advantages and disadvantages to both approaches. But the bottom line is that if a person wants to look at other treatment options, then the tissue should be frozen. Paraffin block samples cannot be used in molecular analysis, as the results obtained are not on a par with results from frozen tissue samples.
Terms untangled:
We post regular updates on research and scientific developments that are relevant to the brain tumour community on our website. Add www. brainstrust.org.uk to your bookmarks, and sign up for our emails to keep up to date.
2 that they are told what level of analysis will be done.
Just as we are all unique, so are all brain tumours. And it is this level of understanding that is going to transform the landscape for people diagnosed with a brain tumour.
The heterogeneity of brain tumours (how they are made up of different cells) means that they are complex, rare and intrinsically resistant diseases. This means that individual treatment agents in isolation are doomed to failure, because there are multiple growth pathways that must be inhibited simultaneously.
What are challenges?the
What do we need to do?
Heterogeneity – consisting of different, distinguishable parts or elements.
Second, not every pathology laboratory is offering the same level of analysis. Where the surgery is done dictates what level of molecular analysis is being carried out. This is another reason why tissue should be frozen, so that if the centre you are at doesn’t offer the breadth of analysis, there is still the option to have the tissue analysed elsewhere. We think that this is a short-term issue. Three centres are currently piloting higher-level analysis, with a view to this being rolled out across other neuroscience centres in the next couple of years.
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We have initiated the conversation with a group that includes neurosurgeons, oncologists and neuropathologists to explore the current state of play and what we need to do to ensure that everyone who wants it has access to the pathology services that will give them the best opportunity for living the life they want. This should be a given, an entitlement for everyone living with a brain tumour, no matter where they live.
The Tessa Jowell BRAIN-MATRIX has proved that it is possible to report the genomic data in a clinical context to guide patient care. In addition, patients with glioblastoma at Addenbrooke’s Hospital, in Cambridge, are being offered a more detailed diagnosis and tailored treatment plan based on genetic
1 that any tissue available after that which is taken for diagnostic purposes is frozen
We have a job to do. We need every person who is having surgery for a brain tumour to ask for two things:
sequencing results turned around in 10 days. The treatment involves looking at DNA sequencing – the genetic code of the cancer cells – and RNA sequencing to examine how the cancer cells behave. This gives doctors a clearer idea of which subtype the cancer is, and how best to treat it.
Molecular testing of a brain tumour opens new options for treatment
For example, a GBM that is MGMT methylated may respond better to chemotherapy than a GBM that doesn’t have this signature. This information should help people make decisions about options for treatment and what is important to them. However, we do need to bear in mind that molecular markers are not absolute; they just give an indication.
What’s happening today?
371 days later …
What was the greatest challenge you had to overcome during the year?
So, really, it never felt like it was my challenge, and I didn’t come into it from a personal perspective, but I’ve definitely got a lot more personally out of it than what I expected. The Team Seth community wasn’t a surprise. The 365 community was a surprise. The personal benefits were a surprise. It’s kind of weird because people keep saying I should be proud and everything, but it was never my challenge; it was Seth’s. I’m surprised I’ve done it, and I look back now, and I can’t quite believe I’ve got to the end. I am a notorious flake! If you had told anybody that knows me, ‘Oh, Greg’s going to swim in the sea every day for a year,’ they would have said, ‘No, he’s not. He’ll definitely miss one, because he’s an idiot!’ But that never happened! To people who ask me now whether I feel the benefits of cold-water swimming, I say no. I don’t know if I feel the benefits of the swimming, but I felt the benefits of the challenge, because it was bigger
than that, and it took on something else. It was what it represented. Three weeks into the challenge, I had a message on Instagram from a lady who lost her husband to a brain tumour and had never heard of brainstrust, and through seeing my early swimming posts, she reached out to brainstrust and got help and counselling, so I was three weeks in and thought, ‘Well, that’s it. It’s already made a difference, and it has achieved its purpose already.’ The lady stayed anonymous, and she never messaged me again, but having that brief interaction with someone was incredible, and whether I had 1,000 followers or 20 followers, that was absolutely worth it.
Seth! It wasn’t my challenge. There was never a day when I thought, ‘Damn it. I’ve got to go for a swim.’
Sunrises were my favourite, and I don’t think I actually did a sunrise swim until day 100. It was a 5.30 a.m. start, but it was definitely worth it.
At the time of writing, Greg is still wild swimming every day and shows no signs of stopping yet! We are so grateful for the money that Greg and all his supporters have raised for brainstrust. The money raised in Seth’s memory will help so many others.
No matter the weather, Greg braved the waves for 371 days
But there were days when I thought, ‘I don’t want to.’ It never got to the point where it felt like it was a chore, because there was a purpose to it rather than just the physical aspect.
Back in our 2021 Logbook, we spoke to Greg Kirkpatrick as he began his epic 365-day swimming challenge. He decided to undertake this challenge in memory of Seth, an amazing boy who sadly lost his life, aged seven, to a brain tumour in 2021. Greg extended his swim to 371 days to coincide with Seth’s celebration-of-life party. By the end of the challenge, Greg had swum over 400 times, at around 40 beaches, and raised over £4,300. We caught up with Greg to ask him about what the last year has meant to him.
something great. Those days were the hardest but the best days, when I think back. Personally, over the year, I went through a break-up of a sixyear relationship and had to move house. The challenge got tough because in your own head, you don’t want to do anything, and you just want to escape from it, but the swimming helped in that way.
never the same beach at the same time of day. I had to keep Seth kind of travelling around, going to different
Mybeaches.favourite swim was when I visited Skye and swam there. Seth’s funeral was a very special swim, and that’s one that I’ll never forget.
Now you’ve completed the challenge, are you looking forward to staying warm and dry for a while, or will we be seeing you back in the water soon?
The biggest single challenge was myself. It’s those days when it’s raining, and there are thunderstorms and the sea is bad, and it’s cold – but those were the days that were the most fulfilling. They were the days that made me feel that I’d achieved
What were your favourite moments during the year?
I think it helped mixing things up, so it didn’t seem like a chore. It was
My next challenge will be for the Little Harbour Children’s Hospice, where Seth was. I am going to attempt a distance swim of five miles in September. The swim will start at Porthpean, where the hospice is, and end in Carlyon Bay, which is where most of my memories are from visiting the beach regularly with Seth and his family, and back again. I haven’t charted the swim yet, but I think it’s four to five miles.
Team Seth gather for Greg’s final swim on the day of Seth’s celebration-of-life party
A pirate party in Seth’s memory
I still do them every now and again, but I haven’t made a habit of them!
There are a few days and swims that stick out and that were a pleasure.
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‘On 10 May 2021, I received a call from Sam, Seth’s mum, to say that Seth had passed away. The first message I sent was to Chris, who founded the 365 Sea Swim Challenge to find out how I sign up and how I go through the process and get on board. The second message was to brainstrust to say this is what I want to do!’
Over a year ago, this whole challenge lay ahead of you. Now you’ve come to the end, how does it compare to what you expected when you first began?
In the moments when it got tough, how did you motivate yourself to keep on going?
by Jenny Hyslop
I then started chemotherapy in September 2021, and although the initial MRIs showed that the tumour was stable, my latest one unfortunately showed that the tumour was in fact regrowing. This was a terrible blow, as I was feeling better than I had been, and I
It gives me great pleasure to think people like my paintings enough that they would like to purchase them. They then in turn feel they are supporting a good cause at the same time.
It was a very hard time for me, as I suddenly lost my business, my driving licence and independence. Our whole world and life we knew had gone, and it felt extremely difficult. But with the help of my family and husband, I got back on my feet.
I find when I’m painting, it completely absorbs my mind, and it’s like a meditation. It stops me worrying and overthinking my future and ifs and buts.
How art helps me on my brain tumour journey
Join our team!
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was feeling I was in the countdown for chemotherapy. The hardest thing was being told to stop having chemo, as it wasn’t working, and although it was awful, I felt I’d lost some control over trying to fight the tumour. I’m now preparing for surgery; I had a few days of crying, but I’m now beginning to accept that it’s something I have to deal with.
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I have always loved painting and drawing, but with a busy diary, I only really had time to paint when on holiday. One of my friends said, ‘Why don’t you just do a small doodle of anything about how you feel?’ I thought about this, and then as the weather was improving, being in May, I decided to sit outside in my garden and paint some spring flowers. It’s art that I’m able to use to focus on and manage my anxieties and worries, and lately I’ve been able to support a few charities.
You’ll be confident that hitting your fundraising target will make an incredible difference. Every step, and supportdifferenceachallenge,everymakeswonderfultothebrainstrust provides for the brain community.tumour
WAS DIAGNOSED with a grade 3 anaplastic astrocytoma a year ago. I was working fulltime running my own private podiatry practice and had been a podiatrist for 22 years, but I was getting increasingly fatigued and struggling to get through a day. Eventually, an MRI scan noted a cyst on my brain, which was causing pressure, so they admitted me with the view to operating the following week. However, I had to have an emergency craniotomy, and my brilliant neurosurgeon literally saved my life by draining a very large cyst on my brain, causing severe pressure. This was then followed up with a second craniotomy three weeks later, to have as much of the tumour that had been underlying the cyst removed as was safely possible.
If being active is your passion, then we invite you to join team brainstrust.
I would advise anyone in a similar situation to me to aim to do something positive every day. Even if it’s just walking round the garden and noting what’s coming into flower and what birds you can hear. I also think a hobby such as crafts is so good at focusing the mind, and if good comes from raising funds and putting a smile on someone’s face, it makes managing yourself and your personal worry much easier.
I have donated a watercolour painting to brainstrust to put on their online art auction. This will again hopefully
help raise much-needed funds for the charity. I have chosen to donate a painting of sheep in a spring orchard, as I feel it gives the feeling of hope and new beginnings and is a scene that may appeal to a wide audience.
ACH YEAR, we have places in a wide range of challenge events. From 10Ks in Bournemouth to marathons around Loch Ness, we’ve got loads of amazing challenge locations, and we’d love to welcome you to team brainstrust.
It’s certainly not easy. There are thankfully more good days than bad for me. As you can see from my journey so far, one thing leads to another. Never give up hope. Every day, we are blessed to be here, and it needs to be grasped with both hands and made the best of. I hope I may have inspired some of you to try something new. I believe it helps keep the mind on track.
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Search for ‘brainstrust Eventbrite’ or upcomingforhello@brainstrust.org.ukemailmoreinformationonour‘arttime’workshops. Challenge event Date Fundraising target Baxters Loch Ness Marathon 2 October 2022 £300 Wizz Air Cardiff Half Marathon 2 October 2022 £300 Run Bournemouth Supersonic 10K 9 October 2022 £150 Brighton Marathon 2 April 2023 £300 London Landmarks Half Marathon 2 April 2023 £300 To find out more visit: brainstrust.org.uk/events By raising £300, you could: l cover the cost of six counselling sessions for a patient or caregiver, offering a safe and confidential space to talk through feelings, understand emotions and explore steps to make positive changes. l fund the provision of seven brain boxes – our tailor-made support package, which we provide for free to people in the UK. Get in touch to discuss your next fundraising@brainstrust.org.ukchallenge:
Why should you join team brainstrust?
This is your chance to be part of the pioneering team of superheroes who will experience the first ever Follow the Seagulls challenge in Brighton. Join our community to raise funds and awareness as we take on 50 miles, over two days, on foot.
Our 2022 superheroes have raised a staggering £35,381 to date!
This wonderfully generous support could provide 354 coaching sessions with our support specialists. These coaching conversations help people focus on the things that matter to them most, so each person can live their best day every day.
It also brings the overall total raised in the nine years of Follow the Seagulls to £240,000
Our pioneer from Brighton, SJ
3 and 4 June 2023
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First walked in 2013 on the Isle of Wight, Follow the Seagulls has grown steadily into a four-location event, but it’s no walk in the park. Our heroes had put in some serious training hours before joining together to experience routes that took in sections of the South West Coast Path, the Cleveland Way and the Fife
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I can’t wait for the next adventure, Brighton 2023! Thank you, brainstrust From a very grateful, slightly different but still me SJ.
To find out more, followtheseagulls.comvisit
Join us in 2023
Huge thanks to everyone who took part, our generous volunteers, who gave their weekend to support our walkers, and to all the family and friends who showed their support too – you’re our superheroes!
UR WALKERS flocked to our coastlines from across the UK, enjoying some amazing weather, dramatic coastal views and stunning countryside as they completed their challenge.
I enjoyed my first Follow the Seagulls so much that I decided that the challenge was not over until I had completed them all. Dartmouth was my first, in 2021, and I completed the Isle of Wight in 2022 I met so many wonderful, inspiring, positive people whilst challenging myself and proving that ‘I am still me and I still can’.
Follow the Seagulls is back on the calendar, April saw us gather again in Whitby, on the Isle of Wight, in Fife, and in Dartmouth to take on the challenge of walking 50 miles in just two days to support the brain tumour community.
I was looking for a way to prove to myself that ‘I am still me and I still can’ (a concept I really struggle with). The opportunity to do all these things and give back, came in the shape of Follow the Seagulls.
Visit the website to find out more and sign followtheseagulls.com/brightonup:.
E HAD the pleasure of meeting an indomitable woman named SJ when she took on her first Follow the Seagulls challenge in 2021 in Dartmouth. In 2022 SJ returned for 2022 to walk the big brain tumour trek again, this time on the Isle of Wight. After trekking 50 miles, rather than hide the walking boots well out of sight, SJ decided to help us set up a Follow the Seagulls hike right on her doorstep. So it’s with thanks to SJ’s energetic spirit that we can now announce ...
New for 2023: Follow the Seagulls Brighton!
We will meet for the start on both days in Brighton, and at various points over the weekend, but you will step into the role of navigator on this selfsupported walk. There will be trails to stick to, and fellow walkers to join up with, and you’ll have to consult your maps, which will be provided and annotated to help you navigate your way around. Whether you choose to walk alone or as part of a group, we will ensure you have an amazing experience.
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When I was diagnosed with a grade 2 right insular oligodendroglioma and had surgery in 2019 brainstrust were there with the support I needed to make this new journey I found myself on bearable. Once the initial shock, healing and emotional turmoil was somewhat under control, I very much wanted and needed a new challenge.
You seemed like a natural to us, but how did you find the shoot day yourself?
This July saw the first PhilFest charity music event, dedicated to and in memory of Phil Jones.
I nearly didn’t at one point! It was an impulsive, spur-of-the-moment thing. I’ve never done owt like that before! It’s not like me. Normally, I plan meticulously, but because I haven’t worked for a couple of years, I’ve been sat in limbo, so I thought, ‘Oh, why not?’
Do your own thing
I’d never heard of a meningioma before I was diagnosed in 2016 At the time I got diagnosed, I started to research but tried to avoid Google. brainstrust was one of the charities I came across. I liked that it was smaller and more local. It felt more personal.
Meet Michelle
Getting out there, it’s helped me give back. We all have a role to play.
This isn’t the first time Jamie has coordinated something special to support the brain tumour community. You may remember a story we shared last summer of his Welsh Three Peaks team challenge, which raised £2,069
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Our shop has had a makeover!
Kerstin raised £2,245 for brainstrust by taking on five of the UK’s six highest roads during her epic 3 Pistes Cycle Sportive challenge on behalf of her good friend Margaret, a fellow cycler who was recently diagnosed with a brain tumour.
Now, thanks to three brilliant final-year photography students and our brainstrust volunteer Michelle, when people come to our online shop, they see our products in their best light.
Michelle is a member of the brainstrust community who came along to model for us. Thanks to Michelle, whenever someone comes to our shop, they see a real face from the brainstrust community.
PhilFest was a sell-out event, raising £2,506! What’s more, PhilFesters had such a great time that we can now see PhilFest becoming an annual event. PhilFest T-shirts were available for all festival-goers, and going on the feedback from the event, maybe they could become collector’s items!
Let’s make some noise and send a tuneful thank-you to Jamie, all the performers and everyone who supported this event for their wonderful support.
Want some inspiration? Here’s what some of our wonderful supporters have been up to
On a grey Monday in April, we headed over to the University of Huddersfield to add a bit of colour to our brainstrust shop.
PhilFest photos by Liam Blackmore, Born to Rock Photography.
The beanie hat. And the grey T-shirt ... I like that ... the grey hoodie ... I just like grey, actually!
Plus, me being a model for the shop is an important part of raising awareness around meningiomas.
Reflecting on PhilFest, Jamie said, ‘The event was a great success and could only have been done due to the fantastic musicians that jumped at the opportunity to perform at the festival. The atmosphere was electric, and it seems like PhilFest will be back soon!’
When you saw our callout for models, what made you sign up and come along?
Do you have a favourite item from our shop?
I get the brainstrust newsletter to find out about research and information. There’s just that confidence of knowing that if you needed to go and find something, you’ve got a port of call. And the newsletters make you think of things that you may have seen and forgotten about, or never thought of before.
RGANISED BY Phil’s son, Jamie, the event brought together nine brilliant bands for a night of great music at the Hi-Tide Inn, in Porthcawl, raising funds for brainstrust.
to support the creation of a webbased glioblastoma resource.
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E LOVE seeing the creative fundraisers our supporters come up with. From duck races to head shaves to cake sales, our supporters have got up to loads of creative fundraising fun over the years. If you’re feeling inspired, head to our ‘Do your own thing’ page for more fundraising inspiration and details around how to get started: brainstrust.org.uk/fundraising
Could you start by telling us a bit about yourself and how you became a part of the brainstrust community?
HIITmarathonworkout
For a while I thought, ‘What have I done?’ But I’ve got the opportunity to help. It’s something different. Why not?
When people think of brain tumours, it’s the C-word. It’s cancer. It’s not always just that. You can have brain tumours that are not cancerous and still have the same treatments, the same effects. A lot of people don’t realise that. It’s more common than people think. We need to raise awareness of this.
Dads vs. footballchildren
The year-six pupils at King’s Hawford School hosted a dads vs. children football match as well as an online auction to raise money for brainstrust in honour of their classmate who was recently diagnosed with a brain tumour.
Rockingrecently.out for brainstrust
I was expecting formality, but although it was professional, it was also informal and relaxed. We got to chat like we’d met loads of times before. And the students were so organised. They were so good! I enjoyed it.
forRidingMargaret
Suzanne marked 10 years since her brain tumour diagnosis by challenging herself to take on 12 HIIT classes in a day, donning a different hat for each workout. 36,000 steps later, Suzanne had raised £785!
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Gifting to brainstrust in your will can help so many people who are diagnosed with a brain tumour in generations to come. Your gift ensures that we can continue to be here to support anyone with a brain tumour, and those close to them. A diagnosis is terrifying, and we know just how isolating it can be –
Your story matters
Regular givers provide much-needed stability and help to keep our support going, meaning we can keep being there for people when they need us.
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If you would like to share your story to help others in a similar situation, please get in touch.
O PROVIDE vital support to the people who need us, we’re reliant on the kindness of our community, whose donations provide invaluable security.
your legacy will mean that people affected by a brain tumour in the future will feel less alone, less afraid and better supported.
01983 292 405.
Call 01983 292 405 or knowyousupportorg.ukEmailfundraising@brainstrust.org.ukemail.Elizaateliza@brainstrust.,orchattooneofourspecialistsnexttimeseethemifyouwanttomore.
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For more information on leaving a gift in your will, or if you are leaving a gift in your will to brainstrust and want to tell us about it, please get in touch with our fundraising team.
Keeping in touch: your data
‘I would like the world to know that life with a brain tumour is hard. Really hard. It is a roller coaster ride full of immense lows, highs and often long waits! I find it to be both exhausting and exhilarating. I guess the exhilarating part is due to the realisation that despite my diagnosis, there is still joy in living.’
Registered charitable trust – brainstrust is a registered charity in England and Wales (1114634), and Scotland (SC044642).
‘My advice for others going through a similar situation to me ... it’s OK. Your tumour is specific to you. Don’t compare your tumour with anyone else’s. Get as much information as you can. Try to stay positive. It’s hard, but you can do it.’
Create a lasting and positive legacy by leaving a gift for brainstrust in your will
By donating £10 a month over a year, you could fund three brain boxes, providing people with the must-have support toolkit, customised for each individual to help them feel informed and prepared to face the road ahead.
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ETTING A brain tumour diagnosis can leave you feeling stranded and alone. Hearing from others who have been in a similar situation can be reassuring and helps you feel less isolated and overwhelmed. That’s why on our website, and across our social media, we share stories from members of our community.
ROVIDING SECURITY for those you love through your will can be a great relief. After you have done this, please consider leaving brainstrust a gift in your will.
‘I want the world to know that just hearing the words “you have a brain tumour” changes you for life.’
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