23-year-old Luton graduate calls for more research into brain tumours
Amani was diagnosed with a grade 4 glioblastoma multiforme last year
A Luton law graduate is supporting a new Brain Tumour Research campaign.
Brain Tumour Research is launching a new campaign today to highlight the need to increase funding and research into the disease.
Last year Amani Liaquat from Luton, was getting ready for her 22nd birthday celebrations at home when she began to feel unwell. She went to lie down and has been told from her mum that she was found on the floor having a seizure.
Amani was diagnosed with a grade 4 glioblastoma multiforme (GBM) - it's the most common primary malignant brain tumour in adults carrying with it an average prognosis of 12 to 18 months.
Faced with extremely limited treatment options in the UK, Amani and her family set about crowdfunding and, thanks to the generosity of family, friends and their community, quickly raised £100,000.
The 23-year-old University of Leicester graduate says it shouldn't come down to fundraising:
"The location and mutation of my tumour mean it's inoperable and incurable. I am blessed that with the money raised I can purchase a trial drug from Germany, which has shown promising results for some with the same mutation as me, H3K27.
"I am blessed to be born into a family and support system with an education who could research treatments and options. There is no booklet you get of options when the typical chemotherapy/radiotherapy doesn't work.
"My life fell apart in the blink of an eye, and I don't know how much time I have left. This has given me a purpose, it might be too late for me but there is a chance I can be a part of something and part of some legacy.
"It's unfair and I am angry that so little investment has gone into this disease, particularly as it affects so many young people just like me, who should have their whole lives ahead of them."
Although brain tumours kill more children and adults under the age of 40 than any other cancer they receive just 1% of the national spend on cancer research.
Amani says the goal of this campaign is to encourage a movement towards more funding and research:
"I feel very strongly that we need the Government, organisations and charities to put pressure - or better still - to compel the pharmaceutical industry to release trial drugs on compassionate grounds without cost to the patients or through funding by the NHS.
"I am blessed to have wonderful friends and family, who are doing all they can to support me and they're praying for the shrinkage of my tumour and easing of my symptoms and that a cure can be found. We have set up an Instagram page, @Fight4Amani, for anyone who is interested in following my journey."
Spokesman for Brain Tumour Research Hugh Adams said:
"Stop the Devastation lays bare the powerful and painful truth about brain tumours - they are indiscriminate, they can affect anyone at any age, there is no cure and for many, sadly, there is little or no hope.
"We are extremely grateful to Amani for opening up on camera to star in the campaign. By sharing her heart-breaking story, she is helping us raise awareness and to drive change.
"Brain Tumour Research is determined to make progress by creating awareness of the horrifying statistics, by funding research at its Centres of Excellence and through its continued lobbying of the Government and the larger cancer charities to increase the national spend."