National brain tumour research funding needs to increase to £35 million a year
Parents' desperate bid to save daughter
A family is crowdfunding for treatment overseas in a bid to save their young daughter’s life.
Sarah Atif was diagnosed with a high-grade diffuse midline glioma (DMG) in January after experiencing problems with her eyesight and becoming lethargic. Seven-year-old Sarah underwent a shunt surgery and a biopsy before having six weeks of radiotherapy.
Determined to “fight this disease all the way”, Sarah’s parents set up a crowdfunding page to raise funds for their beloved daughter to access a clinical trial drug called ONC201 which is only available overseas.
Sarah’s mum Uroos said: “We’ve made up our minds to do whatever’s necessary to save Sarah, even if that means going abroad for treatment. If it doesn’t help, at least we will be satisfied that we did our best for her. We’re a close-knit family and the thought of losing Sarah to this cruel disease is unbearable.”
DMG is an aggressive, high-grade form of brain cancer and is the leading cause of brain tumour deaths in children. The median overall survival is devastatingly short – just eight to 12 months.
Hugh Adams, our Head of Stakeholder Relations, said: “Our thoughts are with the Atif family. Sadly, they are not alone. Many desperate families are forced to seek treatment overseas after exhausting NHS standard of care. This is unacceptable.
“As the leading voice for the UK brain tumour community, we are campaigning for better options and outcomes for patients and their families, including providing the secretariat to the All-Party Parliamentary on Brain Tumours (APPGBT), which recommends in its Inquiry Report that funding bodies should ring-fence specific funding for research into childhood brain tumours.
“The research we are funding brings hope and at our newly-announced Centre of Excellence at the Institute of Cancer Research, Professor Chris Jones and his team will work to improve options for patients diagnosed with deadly high-grade glioma brain tumours, including DMG.”
- Sarah’s story
- New Centre of Excellence brings hope of cure for deadly childhood tumours
- MPs demand action to make brain tumours a critical priority
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