A week of highs and lows sums up the past seven days at Brain Tumour Research.
On Tuesday, the All-Party Parliamentary Group on Brain Tumours (APPGBT) held the first oral evidence session of its inquiry ‘Pathway to a Cure – breaking down the barriers’
The inquiry was established to identify solutions to blockages that affect the ability of the scientific and clinical communities to advance options for, and the outcomes of, those affected by this devastating disease. Tuesday’s session looked at the Government response to calls for greater research funding over the past five years to understand where we are now.
This was the first in a series of meetings that will culminate in a report but more than that it was the beginning of a route to new normal for brain tumour campaigners where the old answers about lack of progress won’t stand up and a novel pathway is being designed that will take us, looking forward, to the next five years having learnt from the past five.
We are excited and we are optimistic.
There will be two more oral evidence sessions for the APPPGBT inquiry in March and at the end of the month there will be the termly meeting of the APPGBT. The inquiry meetings are for panel members and those giving evidence but at the regular APPGBT meetings we want as many MPs in attendance as possible.
So once again it is over to you, our campaigners, to do your stuff and get your MPs involved with brain tumour research and help us with our cause.
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 29th March 09:00 – 10:30
Dear <Your MP’s name>
The APPG on brain tumours will be taking place via Zoom on Tuesday 29th March 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 at hugh@braintumourresearch.org
Speaking of more opportunities, Tuesday sees the start of Brain Tumour Awareness Month so what better time to help us spread the word?
In our awareness month we are looking to Light Up iconic buildings and landmarks across the UK in the brain tumour awareness colours of pink and yellow for families affected by brain tumours. You can either ask your choice of location directly or why not try to get the help of your MP to ask (already we have had a great success with this in Leeds – brilliant work Rory!).
Why not suggest they Light Up for Wear A Hat Day – Friday March 25th?
We are also working on Letters to be sent to the Editors of regional publications across the UK.
Here is a template email. You will need to add a few words (no more than 25 words, as it seems that there is often a limit of 150 words for Letters to the Editor) about your connection to brain tumours, as well as the personal information at the bottom of the email, although please note that only your name and the town/city you live in would actually be published.
Letter to the Editor
(under 150 words)
Dear Editor
The coming month of March is Brain Tumour Awareness Month and my family knows only too well the devastation caused by brain tumours because (brief details in no more than 25 words).
Brain tumours kill more children and adults under the age of 40 than any other cancer, yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease, according to the charity Brain Tumour Research.
Brain Tumour Awareness Month culminates in Wear A Hat Day on Friday 25 March. It would be great if your readers could help raise awareness and/or join in the fun of wearing a hat and donating to Brain Tumour Research to help find a cure.
Yours sincerely
First Name & Surname
Address (Note that newspaper will only publish town or city name)
Phone number (Not for publishing)
Email address (Not for publishing)
Your help with asking MPs to attend our APPG, to lobby for lighting up and then your writing to the local paper would all be excellent things to do during Brain Tumour Awareness Month
In more excellent news this week our work, and the work of the APPGBT have some international recognition, as Maryland-based Northwest Biotherapeutics announced that production has begun of its first dendritic cell cancer vaccine for compassionate use treatment of a glioblastoma patient at its recently licensed UK production facility in Sawston. We spoke to Linda F. Powers, Chairman and Chief Executive Officer of Northwest Biotherapeutics who told us;
“At Northwest Biotherapeutics, we are excited that our advanced manufacturing facility is now operational in Sawston, where we are able to make “Advanced Therapy Medicinal Products” (ATMPs) such as our personalised dendritic cell vaccines for compassionate use brain cancer patients. This is a state-of-the-art facility, and is the culmination of years of investment and development by teams of engineers, technicians, scientists and regulatory experts.
ATMPs comprise cell therapies and gene therapies – including immune cell therapies for cancer. The first immune cell therapies are already reaching patients or in clinical trials in various cancers, and such therapies may offer new hope for brain cancer patients too.
Efforts such as Brain Tumour Research’s campaigns for research funding and for attention to brain cancer (particularly through the All-Party Parliamentary Group on Brain Tumours that Brain Tumour Research provides the secretariat for)) are essential to support the early stage science that develops into novel therapies such as ATMPs. Such efforts are particularly important for brain cancer because of the complexity of brain tumours and their extensive variation from patient to patient.
Today, thanks to this research, there is growing knowledge about the sub-types of brain cancers, the genetic and molecular profiles, and the correlation between certain tumour characteristics and the course that brain cancer follows. This knowledge will help the fight to defeat brain tumours… including through ATMP treatments such as personalised cancer vaccines.”
This week we joined a webinar entitled ‘Making Life Sciences Vision a reality’ and from this the key points to takeaway were;
- How can the lessons learnt from how the NHS tackled Covid be harnessed for future research and innovation?
- NHS staff recognise, through their experiences with Covid, the value of being involved in research and enrolling patients in trials. How can this be enhanced for the future?
- The UK has the infrastructure to support clinical research and this is an important foundation to build on
- It will be important to ensure equity of access for patients onto trials
It does seem that although there is some despondency around NHS workforce, delayed diagnosis due to the pandemic and the need for symptom awareness to reduce the cancer backlog, that the life sciences are an area for optimism. The global pandemic sparked a huge superhuman effort to control coronavirus but have the billions spent also had an unexpected impact on medicine and science? You can read more about this thinking in ‘How Covid changed medicine for the future’
There has been huge coverage of this terrible news and when asked to comment I spoke for all of us at the charity;
“This tragic news has had a huge impact on those of us at Brain Tumour Research who had the privilege to know Amani and her extraordinary family. Amani’s story touched everyone who heard it, and that she was prepared to share so much of herself with others speaks volumes of the person she was.
“We cannot overstate just how many people now know about this vicious disease through Amani’s bravery and her commitment to make a difference by campaigning and raising awareness. She and her family spoke out at a time when it would have been easier for them to retreat and for that, along with our sadness, we have such respect and admiration for this remarkable young woman who has left us far too soon.”
“Her legacy will be with us and drive us on to find a cure for brain tumours.”
The highs and the lows.
RIP Amani
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