FAMILIES WELCOME “DESPERATELY NEEDED” RESEARCH CENTRE

Families have welcomed the announcement of our fourth Brain Tumour Research Centre of Excellence at The Institute of Cancer Research (ICR), Sutton, Surrey. Bringing much-needed hope for the future, the team’s research aims to identify new treatments for high-grade glioma brain tumours – including those previously known as brainstem glioma, diffuse intrinsic pontine glioma (DIPG) and glioblastoma (GBM) – occurring in children and young adults. The median survival for the vast majority of patients diagnosed with these tumours is just nine to 18 months.

Top: Jasmine holding her radiotherapy mask

Centre: Jasmine with parents Anthony and Jakki

Bottom:

It is news Karen Carter says has been “desperately needed for far too long”. Karen’s son Charlie was diagnosed with a GBM in March 2010. He underwent surgery, radiotherapy and chemotherapy, but died just eight months later, at the age of seven.

“We spent hours and hours searching for a cure for our little boy with doors slamming in our faces everywhere we turned. It was exhausting and draining but we were looking for a cure,” Karen said.

“A Centre like this has been desperately needed for far too long and, whilst it’s come too late to save Charlie, our hope is it will prevent other families from having to suffer the same pain our family lives with every day.”

Many families facing these desperate diagnoses turn to crowdfunding to pay for private treatment and trials abroad.

Seven-year-old Jasmine Freeman was diagnosed with an inoperable midline glioma in February 2023. Heartbreakingly, her parents, Anthony Freeman and Jakki Nguyen, have been told Jasmine has just 12 months to live. Anthony said: “Before her diagnosis, Jasmine was a normal child and we knew so little about the disease. To learn that it receives such little Government funding for research is shocking.

“It’s amazing that Brain Tumour Research has launched a Centre to research the disease, including the type Jasmine has. Had this happened years sooner, we may have had the opportunity to watch our little girl grow up.”

When Isabella Ortiz was diagnosed with a DIPG in June 2017, she underwent chemotherapy. After she ran out of treatment options on the NHS, Isabella’s family crowdfunded £120,000 to pay for a private trial. It extended her life, but sadly Isabella died in October 2019, aged five. After their devastating loss, Isabella’s parents donated samples of her brain tissue to the ICR describing it as “her final gift to the world”

Isabella’s mum Assunta said: “We quickly learned what a DIPG diagnosis really meant. It was a death sentence. It wasn’t if she would die, but when.

“This announcement is the news I’ve been waiting for, and I hope it will lead to new drugs, therapies, and treatments for this devastating disease.”

We are grateful to all the families and patients who share their stories to help raise awareness of this devastating disease. If you would like to share your story, contact our dedicated PR team via: media@braintumourresearch.org