Earlier this month the SNP’s Kenneth Gibson, MSP for Cunninghame North tabled a motion calling the Scottish parliament to “urge the Scottish Government to raise public awareness of harder to treat childhood cancers and to provide additional funding to finding a cure”.
The motion praised the work we do alongside Cancer Research UK and DIPG charity, Abbie’s Army and acknowledged that much more research is needed.
A petition set to drive this, supported by Kenneth, is now live until 19 February.
The petition was set up by Fiona Govan from Ayrshire, whose grandson Logan died from a DIPG (diffuse intrinsic pontine glioma) brain tumour in November 2017, aged just three years old.
Fiona said: “When childhood cancer entered our family's life we became aware of the lack of progress not just for DIPG but also for some other childhood cancers, especially on relapse and the woeful lack of funding for childhood cancer research.
“My grandson, just like your child or grandchild, deserved to grow up. He was diagnosed with a fatal brain tumour in relation to which no meaningful progress has been made towards a cure in decades.
“My grandson received the same palliative treatment in 2016, after he was diagnosed, that astronaut Neil Armstrong’s daughter received in 1962.”
Kenneth Gibson MSP commented: "Diffuse intrinsic pontine glioma (DIPG) affects between 20 and 30 children in the UK each year. While clinical research funding tends to be prioritised for conditions with a high prevalence, I believe the life of a DIPG patient is just as valuable as that of any other type of cancer and their families are just as badly affected. We must do all we can to help. I have raised this in Parliament before and was more than happy to do so again, in the form of this motion.
"It is clear that DIPG presents an extreme challenge to cure, but we should be concerned at the lack of progress there has been for over half a century now. With more funding, we can do more to help improve prospects for patients.
"Of course I was disappointed when the petition Fiona lodged at the UK Parliament was terminated - having garnered 37,000 signatures - because of the General Election and urge everyone to sign and share Public Petition PE1783, which calls on the Scottish Parliament to urge the Scottish Government to raise public awareness of harder to treat childhood cancers and to provide additional funding to finding cures.
“I know Fiona is keen to restart a petition in Westminster again and hope this too garners support."
Fiona and her family have gone through a devastating ordeal with Logan’s death, an experience we are aware of far too often.
Their determination in raising awareness of this terrible disease and fighting for more research into brain tumours, is an inspiration and a source of hope for so many other families in our community facing a frightening diagnosis.
We know that it is imperative to continue to drive for policy change at government level so that vital funds are invested in research.
It’s through the efforts of people like Fiona and her family, that we can change these shocking statistics in the future and bring hope to the thousands of people who are diagnosed with a brain tumour every year.