Pin badges at PMQs

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Please help us raise vital awareness of brain tumours by asking your MP to wear a special Limited Edition Royal Crown pin badge during Prime Minister’s Questions (PMQ’s) this coming Wednesday.

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

Subject; - Wear your crown badge at PMQs this Wednesday

Dear <Your MP’s name>

Having been affected by a brain tumour  <please explain how> and as one of your constituents I am asking for your help and support.

From a Parliamentary colleague you will, this week, have received in your Westminster pigeonhole a crown pin badge to celebrate the Queen’s Platinum Jubilee. It has been produced by the charity Brain Tumour Research for whom I am a campaigner. Please would you wear this pin badge for PMQs on Wednesday 25th May to both celebrate the Queen’s Platinum Jubilee and raise vital awareness of brain tumours – the biggest cancer killer of children and adults under the age of 40.

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

Thank you – together I think we can achieve something remarkable on Wednesday.

In December we were proud to announce that an award-winning researcher joins our Imperial team. Dr Sophie Morse’s research is about improved drug delivery to the brain using a non-invasive and targeted ultrasound technology combined with microbubbles. Now being funded by Brain Tumour Research, she will apply this ultrasound technique to the field of brain sciences, specifically to brain tumours. Focused ultrasound is an exciting area of discovery for more effective drug delivery to the brain. This National Geographic article is titled ‘New method delivers life-saving drugs to the brain—using sound waves’ and provides an easy to read overview of focused ultrasound.

Today is Clinical Trials Day which recognises and thanks the people who conduct clinical trials every day to improve public health as well as being an opportunity to raise awareness of clinical trials – and of clinical research as a career option – among the greater public.

James Lind started what is often considered the first randomised clinical trial aboard a ship on May 20, 1747. At that time scurvy is thought to have killed more British seamen than French and Spanish arms.

Aboard his ship, surgeon mate James Lind, a pioneer of naval hygiene and acting on a hunch that scurvy was caused by putrefaction of the body that could be cured through the introduction of acids, recruited 12 men for his “fair test.”

Lind allocated two men to each of six different daily treatments for a period of fourteen days. The six treatments included: 1.1 litres of cider; half a pint of sea water; and two oranges and one lemon. Those allocated citrus fruits experienced “the most sudden and good visible effects,” according to Lind’s report on the trial.

In 2022 clinical trials remain as vital to progress as ever but they come toward the end of a translational pipeline that begins on the scientist’s bench. As stated in our 2019 Manifesto “The NIHR has previously reported that only 6.4% of brain tumour patients are participating in clinical trials compared to 13.3% for breast cancer and 61.4% for leukaemia. We support the ambition for at least 15% of brain tumour patients to be participating in clinical trials by 2025.”

Whatever ambition we might have to get more brain tumour patients onto clinical trials is fundamentally underpinned by appropriate funding for early stage science, because without that there will be no throughput of new developments and trials will cease.

We cannot let that happen and that is why Brain Tumour Research is, and will always be, a research funding and campaigning charity with a vision to find a cure for all brain tumours.

In the past fortnight we have had three awareness days for different types of brain tumour. Last Tuesday (10th May) was Ependymoma Awareness Day, and this Tuesday saw awareness days for both DIPG and Neurofibromatosis. No other site has such variety and complexity and at Brain Tumour Research we are proud to, and will continue to, fund research into different tumour types.

On Ependymoma Awareness Day, we asked our Director of Research, Policy and Innovation, Dr Karen Noble, to tell us a bit more about this tumour type and  what Brain Tumour Research is doing to help find a cure. 

Neurofibromatosis (NF) is a group of genetic conditions which cause tumours to grow along nerves. There are three types of Neurofibromatosis: Neurofibromatosis Type 1 (NF1), Neurofibromatosis Type 2 (NF2) and Schwannomatosis. The most common brain tumours associated with NF2 are acoustic neuroma, schwannoma, ependymoma and meningioma. Like brain tumours themselves, there is no cure for NF2. However, the research we are funding at our Centre of Excellence at the University of Plymouth could help lead towards finding a cure for this condition.

To commemorate DIPG awareness day Dr Noble wrote another blog post about DIPG and what we’re doing to find a cure.

When it comes to acoustic neuromas someone with more than a little knowledge of this tumour type from a patient perspective is Lord Stuart Polak and at this week’s AGM of the All Party Parliamentary Group on Brain Tumours we were delighted that Lord Polak was elected to our list of APPGBT officers. We were further strengthened by the addition of Jane Hunt MP, both joining the existing team under the continuing chairmanship of Derek Thomas. Derek said: "I am honoured to continue in my position as Chair of this group and would like to give a huge vote of thanks to the Parliamentarians who are supportive of the APPGBT. We are motivated by the stories we hear from the brain tumour community and I am really positive about the impact our current inquiry into the ‘Pathway to a Cure’ is going to have.

"Change can’t come soon enough in terms of new options and better outcomes for brain tumour patients and it is the aim of all of us involved in the APPGBT to make a difference. It is a cause we all care very deeply about.”

The APPGBT officers are a group of engaged politicians. Together, as brain tumour campaigners, let us see how many more we can engage by getting them to wear our crown pin badge at PMQs on Wednesday.

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