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National brain tumour research funding needs to increase to £35 million a year

In memory of Edie Jackson

We are deeply saddened to share the news that seven-year-old Edie Jackson has died following a 14-month battle with a brain tumour.

Edie was diagnosed with a diffuse intrinsic pontine glioma (DIPG) in November 2019. The community in and around her home town of Waltham Abbey in Essex between them raised £300,000 to pay for private treatment overseas, but sadly it would never be enough to save her from this cruel disease. Edie passed away on 26th January.

Her aunt, Emmie Adams, shared the heart-breaking news in a post in the Edie’s Fight Facebook group: “It is with an indescribable sadness and a deep sense of pride that we write to tell you that Edie, our Warrior Princess and the bravest girl we know, passed away, surrounded by her loving family at 5.30pm yesterday.

“We are sad because she is no longer with us, although our seven years of beautiful memories of her will always live on, but also proud at the life she led and the legacy she left.”

Hugh Adams, Head of Stakeholder Relations at Brain Tumour Research, said: “We were so very sorry to hear the desperately sad news of Edie’s passing and our heartfelt sympathies go to Edie’s parents Lois and Craig, older brother Charlie and all of Edie’s loved ones, whose lives have been shattered by this uniquely cruel disease. 

“Edie’s strength and tenacity, in the face of such adversity, was truly admirable and we will remember her as we continue in our fight to find a cure for brain tumours.

“It’s just not good enough that families like the Jacksons have to resort to raising hundreds of thousands of pounds to access treatment abroad, only to ultimately suffer such a tragic loss as theirs. We remain committed to campaigning for brain tumour research funding to be increased to £35 million a year. It’s only through research that we will find more effective treatments for brain tumour patients and, ultimately, a cure. We invite people to join our campaign by signing our petition. We owe it to Edie, to her family and to everyone for whom DIPG becomes a devastating reality.”  

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