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Brain tumours kill more children and adults under the age of 40 than any other cancer

Tom Parker at the APPG and why you campaign

Tom Parker at the APPG and why you campaign
by Hugh Adams

We have a date for the next meeting of the APPG on Brain Tumours (APPGBT).

It will be on the morning of Tuesday 7th December and run from 09:00 until 10:30. The full agenda is being finalised but what we do know is that as well as being an opportunity to update MPs on the APPGBT inquiry, ‘Pathway to a cure – breaking down the barriers’, the APPG will be addressed by Tom Parker, singer and brain tumour patient.

Tom will be sharing his thoughts on his brain tumour journey so far and as anyone who saw the recent Channel 4 documentary film that followed him will be aware, he is an eloquent, intelligent and questioning man who is a passionate advocate for more research into brain tumours. This will be a fascinating meeting and Tom will be joined by close friend and long term GBM survivor Dave Bolton, who also featured in the film, and is someone who has helped Tom immensely during his time post-diagnosis.

For many of you new to our campaigning group this will be your first time to engage with your MP and here is what to do;

Please could you all send the following (or a personalised version of the following) as a ‘Save the Date’ email to your MPs this weekend? Remember to Cc me (hugh@braintumourresearch.org).  

Subject; - APPG on brain tumours 7th December 09:00 – 10:30

Dear <Your MP’s name>

The APPG on brain tumours will be taking place via Zoom on Tuesday 7th December from 09:00 – 10:30 and will be chaired by Derek Thomas MP. An invite, agenda and briefing document from the charity Brain Tumour Research who provide the APPG’s secretariat will be forthcoming in due course and Hugh from the charity is Cc’d. As your constituent, and as someone who is passionate about improving options and outcomes for brain tumour patients I am asking if you could please make space in your diary and join that meeting.

It would be hugely appreciated.

…..

<Your Name>

<Your postal address and postcode>

If you don’t already have it - you can find your MP’s name and address here:

https://members.parliament.uk/members/Commons

Don’t worry if you don’t get a reply straightaway, there will be more opportunities to lobby your MP in the coming weeks. Please forward any replies to me hugh@braintumourresearch.org

For those of you who are new to campaigning, you may be interested to know more about the motivation of other campaigners.

Derek Thomas for example has told us “It is essential that the UK leads the way in investing in research into brain tumours. Our APPG will call for action and leadership from the Government. A brain tumour diagnosis is as devastating today as it was 20 years ago, this is unacceptable for all the patients and families in our communities."

We asked two other members of our campaigning community, Holly Roberts and Kaz Melvin the question – why do you campaign for Brain Tumour Research

Holly Roberts’ son Larsen that has was just five years old when, in December 2019, he died from a rare, high-grade medulloepithelioma (MEPL). His story is an achingly sad and deeply affecting.

Holly campaigns for more funding for brain tumour research to help prevent other families from experiencing the same devastation.

She said: “Gradually, I’ve been able to channel some of my grief into raising awareness of the lack of options for brain tumour patients like Larsen. I supported the #BrainTumourPetition calling on the Government to stop the devastation caused by this horrendous disease.

"I have engaged with our MP Nadia Whittome too because I wanted her to be aware of the issues surrounding our loss. She has been brilliant and asked the Secretary of State for Health and Social Care what steps his department is taking to improve outcomes for brain tumour patients. I will continue to engage with her and other politicians to encourage them to address the injustices surrounding this disease. The desperation for kinder (and more successful) treatments is the real drive for us. Larsen died from the chemotherapy and in fact almost every side effect and problem he encountered was from surgery and treatment and not from his tumour.

“I can’t change what has happened but I am determined to influence what will happen.”

Earlier this year Ria Melvin, who was diagnosed with a glioblastoma multiforme (GBM) when she was just 23, said: “In the two years since I started my brain tumour journey, I have met a lot of people who have had to fundraise and go abroad to access alternative treatments unavailable to us in the UK. I have spoken to my local MP who is the parliamentary private secretary to the Prime Minister and told him about this and about the desperate need to increase the national investment into brain tumour research.

“It gives me a real sense of purpose, knowing I am helping others in my situation.”

Ria passed away in August and her sister Kaz told us: “Campaigning meant a lot to Ria. It gave her a renewed purpose and sense of meaning to her life. But more than that, it helped her start to come to terms with her own diagnosis which was an important turning point in her journey. She started to feel part of something bigger and wanted to fight to improve outcomes for others in the same situation.

“As a family we will continue Ria's work and campaign for brain tumour research in her name.”

Campaigning brings purpose and, most of all, it brings hope.

Another passionate and dedicated campaigner is Nicki Hopkins who many of you will have seen and heard at our virtual events or because you followed her husband David ( Did) Hopkins on Twitter.  Sadly, David was taken away from Nicki on 6th November and we were privileged to attend the celebration of his life on Wednesday just as we were honoured to join Ria’s family in August as they celebrated her life.

We will continue to work alongside Nicki and the family – they have done so much to raise awareness of families researching, accessing and then self-funding treatment, treatment not available to them on the NHS.

The kind words about Brain Tumour Research at these emotional, beautiful, poignant and unique days both move and motivate us.

They also continue to illustrate just how indiscriminate this disease is.

Five year old Larsen, footballing Ria, life loving and larger than life Did and fitness instructor and personal trainer Paul Emsleywho I spent time talking about with his wife Julie on BBC Bristol this week – the only thing they have in common is that their lives were cruelly curtailed, and their families devastatingly impacted, by a brain tumour, and we don’t know why.

So much cancer strategy has been about public health education.

Strides have been made with smoking, the promotion of a healthier diet, the benefits of more exercise and less alcohol.

Huge leaps have been made in patient prevention from cancer – but not in brain cancer.

We do not have any substantial evidence to suggest that lifestyle factors influence a brain tumour diagnosis which is why they often come as such a shock.

If we don’t know the cause of the disease how can we navigate the route to the cure?

The case for funding the discovery science that leads to knowledge, understanding and ultimately a cure is impossible to argue against. The reality if we don’t do this is as obvious as it is stark; nothing will change for those diagnosed with a brain tumour and stories like those of Larsen, Ria, Did and Paul will continue.

We can’t let that happen and that is why we campaign.

We hear your stories of loss, anguish and despair, but also your stories of resilience, of success and of hope.

Whatever your story, if you want to share it with us and our community, please let me know. My colleagues will work with you - they are compassionate with our community and passionate about our campaigning. – and remember nothing will be shared about your story without your full participation and agreement.

By standing alongside us we can inform, educate, raise awareness and above all walk together on the pathway to a cure.

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