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If only brain tumour research could be funded in the same way as leukaemia and other cancers

Task & Finish Working Group – 17.05.17

The third meeting of the Department of Health Task and Finish working group on the investment into brain tumour research took place on the 17th May. This was attended by our Chief Executive Sue Farrington Smith MBE and our Director of Research Dr Kieran Breen.

This group was established in 2016 as a direct result of the Parliamentary debate on research funding for brain tumours which was attended by over 70 MPs. This followed the fantastic e-petition, established by Maria Lester who lost her brother Stephen to a brain tumour. This was supported by Brain Tumour Research and received over 120,000 signatures (https://www.braintumourresearch.org/lobbying). A House of Commons Petitions Committee report also identified a stark underinvestment in brain tumour research.

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Lola Rice – In Our Hearts

Lola RiceLola had been a happy, healthy little girl, excited about her upcoming third birthday, when a sudden bout of sickness struck in 2006. Initially dismissed by doctors as a tummy bug, there seemed no cause for concern. Lola then suffered a seizure and was rushed to hospital by her scared parents, to be told that their darling eldest daughter had a large brain tumour covering the right side of her brain. Despite emergency surgery, Lola died the next morning, just four days after she first became ill.

“When I’m laying the table or counting the girls into the car, I still feel that there’s someone missing. I don’t think that you get over grief like this, maybe you just get better at hiding it but the feelings are always there.”

Here is Lola’s story, told by her mum, Michelle de la Motte-Rice:

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Catrin Ireland – In Hope

Catrin IrelandNumber 13 definitely turned out to be unlucky for me – I was diagnosed with a meningioma brain tumour on our 13th wedding anniversary. Surgery left me with vision and balance issues – I feel very dizzy walking any distance and suffer with extreme fatigue which means I regularly find myself needing to sleep during the day. Obviously, I had to give up my driving licence. I now get around on a mobility scooter which isn’t what I ever imagined I would be doing aged 41.

“It seemed completely surreal when I heard the words ‘brain tumour’ as that thought hadn’t even entered my head. I found myself pacing the corridors of the hospital, crying and swearing (which isn’t like me), while my husband kept trying to hug me. The date was the 23rd May – a day I will always remember because we should have been celebrating our 13th Wedding Anniversary!”

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Cannabis and brain tumours

The potential therapeutic effects of cannabis have gained a lot of attention in recent years, from both brain tumour patients and within the media.

Two of Brain Tumour Research’s Member Charities have now joined forces to launch a study into the clinical effects of cannabidiol (CBD), the non-psychoactive ingredient in cannabis. The research, builds upon previous research in this area and will be conducted by the Children’s Brain Tumour Research Centre at the University of Nottingham, and is being co-funded by the Astro Brain Tumour Fund and other brain tumour foundations.

The calls for research into the effectiveness of cannabis-based treatments have not just been prompted by a growing number of brain tumour patients and researchers, but also by Parliamentarians.

In the run-up to the General Election, Baroness Meacher, Co-Chair of the All-Party Parliamentary Group on Drug Policy Reform has called for a relaxation of the rules around cannabis-based medicines. It has been noted how cannabis can also provide symptomatic relief to patients with various conditions, and it is licensed for the treatment of multiple sclerosis.

Our Director of Research, Dr Kieran Breen, has analysed the current evidence for the use of cannabis as a potential treatment for brain tumours.

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Two minutes with… Hugh Adams, Head of PR and Media Relations

Hugh speaking IBTA Barcelona 2015-2-34

What’s the first thing you do in the morning?

Listen to the six o’clock news on BBC Radio 4 to see what’s breaking of interest to the brain tumour community

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