The Silas Pullen Fund was set up in January 2014 in memory of 11-year-old Silas who sadly died from a high-grade glioma brain tumour just 16 months after his diagnosis.
It has raised money by inspiring its supporters to run marathons and cycle from Land’s End to John O Groats, climb mountains and take part in golf days, by hosting star-studded London comedy nights, music festivals and fancy-dress balls, by galvanising Silas’s and his brothers’ schools into action and through partnerships with companies such as XL Catlin Insurance (now part of AXA), Shepherd Neame and several charitable trusts.
To raise awareness, the Pullen family and friends devised an ‘It is a no Brainer’ campaign, in 2017, which featured an array of celebrities and sports personalities wearing The Brain Tumour Charity’s red bandana during Brain Tumour Awareness Month.
Inspired by the love of the family and the devastation of Silas’ diagnosis, the campaign raised huge awareness across the UK and internationally.
A Mighty Boy
Silas’s mother Sarah wrote about his life, treatment and her experience of dealing with grief in her book ‘A Mighty Boy’ which was published in 2017 with all proceeds going to the fund.
She has also been a keynote speaker at medical conferences highlighting the importance of medical professionals listening to patients and their families as “experts by experience’ and together with her husband, Ben, has been involved with patient mandate groups trying to drive change for the brain tumour community.
Throughout all this, the Pullen family and their supporters have driven awareness of the devastating effects of brain tumours and the woeful lack of government funding for research into paediatric brain tumours. The shared grief and determination to ensure other families do not suffer similar experiences, continues to galvanise the community to advocate for better and kinder treatments.
All the money that the fund has raised in the last couple of years has been ring-fenced for future clinical trials for high-grade paediatric brain tumours.
And they are not stopping there. On Thursday 12th September, The Fund is holding a fundraising event at The Clapham Grand – where the band Jam Sandwich, long-time supporters of the fund, will be playing a famously crowd-pleasing set.
Inspiring the community
The Pullen family have been pivotal supporters of The Brain Tumour Charity as close friends of its founders Neil and Angela Dickson who lost their daughter Samantha to a brain tumour.
The Silas Pullen Fund topped £1m last month after receiving a donation from another family whose son, Rory St John, died from a brain tumour earlier this year (Rory, pictured below).
Rory’s mother, Susannah, from nearby East Sussex, read Sarah’s book about Silas while Rory, 29, had been living with his own diagnosis for seven years. The St John family decided to make the donation as they felt that this charity would be the best way to help make a difference for other families bearing this awful diagnosis, and that this would be something that Rory would want.
“It is incredibly generous, and I do not want this milestone to be marked in any way without acknowledging the St John family and Rory's part in it. As mothers all we want is for our boys' lives not to have been in vain and by continuing to drive for change in both Silas’ and Rory’s names we hope to give them a lasting legacy.”
Out heartfelt thanks
Dr Michele Afif, CEO of The Brain Tumour Charity said: “On behalf of all of us at The Brain Tumour Charity and the wider community, we want to say a ‘Mighty’ THANK YOU for reaching the astonishing milestone of raising £1m for The Silas Pullen Fund.
“The creativity and dedication of The Silas Pullen Fund over the last few years and the extensive array of fundraising activities is truly awe-inspiring. We continue to witness the vast amount of love and support for the family in Silas’ memory and the impact that his story and The Fund have for anyone touched by a brain tumour diagnosis. They continue to be at the heart of what we do as a charity.
“The Silas Pullen Fund has become the first of our Supporter Groups to achieve this accolade – something that I’m sure would have made both Silas and Rory incredibly proud.
“It drives us to be tireless in our work to not only find and then fund research into more effective and kinder treatments, but also to support those who are living with a brain tumour diagnosis right now and to amplify their voice in the hope of achieving real change.”
