She died just 5 MONTHS after her diagnosis.
In 2011 BTL-UK Ray Mifsud and his wife Amanda sadly lost their daughter (Abbie) to brain cancer known as DIPG or Diffuse Intrinsic Pontine Glioma. She was just six years old and she died just 5 MONTHS after her diagnosis.
Ray and Amanda were shocked and appalled to learn that children with DIPG have had no real advancements in treatment in more than 50 years.
Neil Armstrong’s daughter Karen ‘Muffy’ Armstrong died of DIPG in 1962, six years before Neil went to the moon. Today, a child still only receives the same therapy radiation as frontline ‘standard of care’. We needed to change that!
“It makes absolutely no sense”
Since Abbie’s death, her charity ‘Abbie’s Army’ was formed to help fund research into this uniformly fatal form of the disease. The charity has donated almost £1.7m directly to specific research with the help of its scientific advisories, to advance the field.
“It makes absolutely no sense, and is totally unacceptable that children affected by this most fatal of all brain cancers have to essentially ‘go home and make memories’ for the limited time they have”.
NOW, we have an amazing opportunity to support a clinical trial for 12 children that will be the first ever use in the UK of an immunotherapy known as CAR T-cell therapy. This will take place at the world leading Great Ormond Street Children’s Hospital.
Unfortunately clinical trials are highly complex and expensive to run. As a charity we have already invested around £700,000 in the process. We still need to do more!
We urgently need to raise a further £400,000 to make this trial a reality.
For the first time, we are asking our ‘Industry’ if they can help ‘BTL-UK’ Beat Brain Cancer.
Clinical trials are the only ‘hope’ for parents of children with this disease. Currently the UK does not have anything to offer. It’s about time that children with DIPG had more opportunities and were not simply sent home to die.