OurBrainBank in the UK

2023 was a busy year for the charity in the UK with lots of positive progress to help towards our mission of moving Glioblastoma from terminal to treatable. Without your support these achievements would not be possible. I and the other trustees just wanted to thank you for being one of our supporters.

As well as our successes, the year sadly but inevitably saw the death of many more patients suffering from the disease. It is hard not to be moved by their stories and personal challenges. Some of these stories made the headlines, including our own UK trustee Laura Nuttall. Laura, like our founder Jessica Morris was a fierce campaigner and ambassador for improving outcomes for patients. The memories and inspiration that they give us acutely remind us of the extreme importance of our campaign, not just for current sufferers but those who are sadly yet to be diagnosed.

We look forward to the year ahead positively, especially given some of the exciting and interesting science that is being done in the field of genomics, but with a sense of grit and determination knowing that to turn this science into efficacious treatments that can be given to patients, will require a lot of hard work, perseverance and resources.

Jake Arnold-Forster, Chair of UK Trustees

WHITEPAPER

The paper was launched at the British Neuro-Oncology Society conference in Manchester and our campaign received widespread media coverage including in The Sunday Times, The Sun, The Independent, BBC News and the London Evening Standard.

UK CAMPAIGN 2024

Following on from the publication of our white paper: in the coming year we will campaigning for the five key recommendations that came out of the report. They are:

1. Universal frozen tissue storage

2. Universal genomic sequencing

3. GBM specific information on the NHS website

4. An increase in the number of UK trials

5. Research which turns science into treatments (Bench to Bedside)

GENOMIC TESTING

A recent question raised in parliament showed that a total of only 533 brain tumour patients had the whole genome of their cancer sequenced. With an estimated 12,288 brain tumour diagnoses every year in the UK, of which 3,200 are Glioblastoma this is a tiny fraction of the patients being diagnosed.

There is a very long way to go to meet the governments 2018 commitment of making whole genome sequencing available to all patients with rare cancers, which is something we will continue to campaign fiercely for.

FUNDRAISING

Thank you to everyone who donated and fundraised for OurBrainBank in 2023. There have been some outstanding feats of commitment and endurance.

Carol McLeod raised more than £11,000 walking the Fife Coastal Path with a group of friends in memory of her husband Neil, who sadly died of glioblastoma.

In October 2023 Peter Tenenbaum cycled 1200 miles from London to Valencia, in memory of Jana Bennett and raised in excess of £17,000.

If you are planning an event to raise money for OBB UK, please get in touch with our new campaign manager.

CAMPAIGN MANAGER

If you have any ideas about how you can help to drive the campaign in the UK, or are planning a fundraising event for OBB please contact Matthew directly. He typically works on a Tuesday, Wednesday and Thursday.

APPG BRAIN TUMOURS

On 28th February 2023 the APPGBT launched its inquiry report “Pathway to a Cure – breaking down the barriers” demanding action to make brain tumour research a “critical priority”, something we support and are campaigning for.

DONATE

You can make a one-off donation to OBB UK or setup a fundraising page on our behalf through Just Giving. If you would like to make a regular gift, or adjust your current regular gift you can do this through PayPal. Thank you.