Words by Smiley Team
At least 88,000 people are estimated to be living with a brain tumour in the UK. These tumours are the number one cancer killer of children and adults under 40 years old – and just 12% of people survive a brain tumour diagnosis for more than five years.
The Brain Tumour Charity is dedicated to raising awareness of the condition, finding a cure and providing support for anyone affected by a diagnosis of either themselves or a loved one. It was established in 1996 by Neil and Angela Dickson after losing their teenage daughter, Samantha, to the disease. At the time, they were horrified by the relative lack of research into the disease and how there was limited support in place for people affected by it.
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25 years on, it’s now the world's leading brain tumour charity and the largest dedicated funder of research into brain tumours globally. The charity has a group of Young Ambassadors – young adults between 18 and 25 – who help to bring about change for people affected by the disease.
For Brain Tumour Awareness Month in March, Smiley News had the opportunity to speak to three of those individuals – Jeremy, Emma, and Dhwani.
Dhwani Kothari, 20, from Woking in Surrey, had her childhood impacted by the diagnosis of a close member of her family when she was just eight years old. Now, Dhwani is determined to help others who have been affected by the disease and channel her traumatic experiences into something positive.
“I have experienced first-hand what a big impact a brain tumour diagnosis can have – it was so very difficult for our family at the time,” she said. “That’s why I am now so passionate about raising awareness of the disease, especially the importance of early diagnosis and of the many different tumour types there are.
“There is a domino effect when a person is diagnosed with a brain tumour – everyone around them is affected in some way. It dramatically changed my childhood. But, now I want that domino effect to help others by passing on what I have learnt and experienced so that people know they are not alone and that support is out there.”
Dhwani is keen to host more events at her university following the success of a similar occasion last year where she spoke to her fellow students about her experiences. She is also keen to use social media to reach a wide and new audience about the work of The Brain Tumour Charity and encourage other people to get involved and support the organisation too having already used digital channels to fundraise and run Facebook Live events.
Emma Brittain, 24, from Altrincham, found out about the charity after her older brother Harry was diagnosed with an oligodendroglioma in January 2020 when he was 24. He had a seizure at home and was rushed to hospital where a full body scan found the mass on his brain. Before this, Harry had no known symptoms or signs of a tumour, not even a headache. He has had surgery, chemotherapy and radiotherapy to treat it – and his family is incredibly proud of how he is handling it all.
Emma wanted to make a difference to help the charity so she searched online, found The Brain Tumour Charity, and got her trainers on to do some fundraising – she has raised more than £4,000 so far.
“I am very proud to be a Young Ambassador,” she said. “For me, this accolade means raising awareness about brain tumours and how underfunded this area of medical research is – just 3% of cancer research funding is spent on brain tumours. Prior to my brother’s diagnosis, I’ll admit that I was uninformed of just how many different types of tumours there are, and how many people are impacted by brain tumours.
“I hope to make an impact on the amount of time that it takes for people to be accurately diagnosed with a brain tumour, to raise funds for the charity, and to ultimately support the organisation in achieving their goals of finding cure and halving the harm brain tumours cause.”
Jeremy Daubeny, 20, from Tunbridge Wells, had his life turned upside down in November 2017, when his dad was diagnosed with a brain tumour. After he passed away, he undertook an eight-week fundraising challenge where he cycled around Britain in search of the best breakfast. His ‘Tour de Full English’ raised nearly £40,000. It was this that made him want to become part of the charity.
“I think being a Young Ambassador is an expression of love for my Dad that keeps him firmly in my memories,” he said. “Watching someone you love so much suffer was just heartbreaking. Brain tumours steal your independence in such a rapid fashion and I don't want anyone to have to lose someone so cruelly again.
“Being an ambassador is a regular commitment to raise awareness and precious funds for the charity. I'd love to encourage people to fundraise in the most creative ways possible. It's an amazing community we have and I guess it's rare to all be so focused on an emotionally charged common goal. It's been incredible getting to know the stories of other Young Ambassadors as we attempt to turn a tough set of cards into something slightly positive.”
Since his fundraising challenge, Jeremy has been involved with the All Party Parliamentary Group on Cancer, as well as talking about his Dad's experiences with a tumour for a new year fundraising campaign from the charity.
Alex Lochrane, CEO at The Brain Tumour Charity, said: “Jeremy, Emma and Dhwani are three amazing young people who we’re so very proud to have as part of our incredible team of Young Ambassadors.
“Each of them has very close personal experience of the impact of a brain tumour following the diagnosis of a loved one and we are so grateful for all they are doing to advocate for so many others, channelling their energy and passion to help drive change for everyone affected by the disease.
"I am certain they will achieve great things in their roles as Young Ambassadors to help raise awareness of the impact that brain tumours have and what people can do to help."
GET SUPPORT: Anyone affected by a brain tumour can get in touch for support and information on 0808 800 0004 or by emailing [email protected].
DONATE: Help the charity continue their vital work by donating.
