Earlier this week Vicki, the mother of nine-year-old Kyle Morrison, asked on the Kyle’s Army (DIPG Warrior)  Facebook page “Please could I ask a favour of any of you that are interested in making a change to sign up to and join the campaign to get more funding for research into brain tumours here in the UK and help to find a cure for this evil monster together we can make a difference” and linked to our Campaign With Us page.

Many of you signed, and joined, and I wrote to every one of you thanking you for your support.

I have the saddest of news – on Thursday Vicki posted “today my beautiful Kyle passed away at 10.39am surrounded by his family.”

You poor, poor boy – you deserved so much more.

If you would like to read more about Kyle, and add comment in tribute, visit our Facebook page

Those of you new to Brain Tumour Research may not be aware of our Founder and Chief Executive, Sue Farrington Smith’s link to DIPG. Driven by the loss of her niece, Alison Phelan, to a brain stem glioma (DIPG) just before her eighth birthday, Sue co-founded the charity “Ali’s Dream” after being shocked to discover the lack of awareness and chronic under-funding of research into brain tumours. Sue led the coming together of multiple charities in 2009 to launch Brain Tumour Research, facilitated by fellow member The Diana Ford Trust, with a vision to find a cure for brain tumours.

This week we also learned Tom Parker, one of the members of boy band The Wanted, has been diagnosed with an incurable brain tumour.

The 32-year old singer, who is married to actress Kelsey Hardwick, is dad to 16-month-old Aurelia. The couple are expecting their second child.

After a week like this we hear your howls of outrage and despair. We hear your stories of defiance in the face of a poor prognosis and your messages of love and support. But what we hear loud and clear is that we must do something to make a difference.

Sign our #braintumourpetition joining the 20,000 who have already done so; it is something we can all do as a positive action.

Sharing your stories is another.

From a campaigning angle we must focus our efforts on what do we want we want?

• We want to find a cure for all types of brain tumours
• We want to see parity with other cancers and a national spend on brain tumour research of £35 million a year

I honestly believe that the APPG is our platform for change and we must get our MPs to attend these meetings.

And don’t give up! Yesterday I received an email from a former Health Minister, saying that he is expecting to attend our APPG for the first time. One of our campaigners has emailed this politician tenaciously again and again and, although he has always replied with courtesy, now, finally, he is now taking that next step of engagement.

In other campaigning news last week I promised to update you all on a recent fringe meeting at the Conservative Party Conference and a newly launched report from the ABPI, both focussing on clinical trials.

At the fringe meeting, Minister for Innovation, Lord James Bethell said that the clinical trial area was an area "that needed to be reformed urgently". He spoke about the need for speed and adaptability within the NHS and the wider healthcare policy environment. "It frustrates me on clinical trials that it takes too long and costs far too much… I hate to sound out of proportion on this, but we should be trying to do ten times more clinical trials than today" he said.

The ABPI published its report on clinical trials entitled ‘How the UK can transform the clinical trials research environment’. The key output is that the UK Government should take urgent action to plan and implement the sustainable restart of non-COVID-19 clinical research at pace and scale, through, amongst others, the following: 

• Transforming the UK clinical research environment with investment to increase levels of research beyond pre-COVID levels
  • The UK Government should increase investment for the National Institute for Health Research (NIHR), Health Research Authority (HRA), Medicines and Healthcare products Regulatory Agency (MHRA) and other organisations which drive and facilitate clinical research across the UK, in order to support the changes in the system needed to transform our clinical research environment.
• Ensuring that all patients have the opportunity to be involved and engaged with research
  • The research community must continue to work with Government, funders, and the public, to tackle issues around diversity and inclusion, ensuring all patients across the UK have the opportunity to be involved and engaged with research.

Better research funding for discovery science means more clinical trials and then improved options and outcomes for patients but without the first step we cannot have the others.

RIP Kyle.

Related reading:

• What is a diffuse intrinsic pontine glioma (DIPG) / diffuse midline glioma tumour?
• What is glioblastoma multiforme?