News archive 2013
Edinburgh researcher, Julia Day, to run 60 miles to the Commonwealth Games to help people with a brain tumour
On Thursday 31 July, Clinical Researcher Julia Day will be running an ultra-marathon – 60 miles from her home in Edinburgh to Glasgow to watch the boxing finals at the Commonwealth Games.
Julia will be joined by her boyfriend Roan, and they will be raising money for brainstrust and our work to help people with a brain tumour in Scotland. Julia, a Clinical Researcher in psychology based at the University of Edinburgh, is closely involved in brainstrust’s work.
This will be a huge challenge as neither Julia nor Roan have run more than a half marathon, but they are both determined to complete the run – or miss the boxing finals!
Julia says: People living with a brain or spinal cord tumour often experience physical, cognitive, psychological, mood and seizure related problems following treatment. The transitions that occur following treatment to regain a sense of normality and to improve quality of life are hard, and patients often feel they haven't received enough information, support or help. We are working with brainstrust to improve the protocols and pathways of referral for patients with a brain or spinal cord tumour for patients to receive the support and care they need. We are raising money...
Read full storyCategory: Fundraising News | Published: 30 July 2014
Congratulations to Liz Eldrige who has just swum across the Solent! And of course also to Stan Holloway for swimming both ways in 1:25:08 to Robbie Phillips 43:50 to Neil Phillips 45:59 with Liz being a brilliant 48:56.
04.30 alarm call, set off from Pitts at 05.00, with Stan leaving Colwell Bay at 05.45. Liz, Neil and Robbie joined Stan at 06.30 from Hursts after Stan did first leg in 42:54. Perfect conditions, light airs and the sun came out. On the way over to Colwell Liz's lucky Barn Owl arranged a fly past and during the swim a seal popped its head above water to say hello to the Mad M & M's in their assorted coloured hats!
Thanks to Darcy Muncer and Rhys Hunt our Kayakers who planned route, tides and safety, to Pete Summerhayes for being Rib Meister and also to Tom Davis and Gill Davis aboard the Mother Ship - Middle Watch for fending off cruisers and other passing vessels.
We are all very proud of Liz and we know her Dad and Jan are too! Thanks to friends for support ashore and to all of...
Read full storyCategory: Fundraising News | Published: 17 July 2014
Driving improvemants in Neurorehabilitation for people living with a brain tumour is huge on our agenda: improvements here are key to unlocking brain tumour support for thousands of people.
With this in mind we are growing a community of clinicians and researchers who are interested in this field. We know good rehabilitation and psychological care improves quality of life for people with living a brain tumour. And a better quality of life often means a better outcome.
But we know that this care is hard to get right. Our work to understand real issues that people with a brain tumour face has shown us this. Despite having had excellent treatment, people feel lost, confused and isolated. And this isn’t right.
We want to make things better. Our community is a conduit for people to solve collectively and collaboratively the issues that need addressing. A significant gap on the patient journey is survivorship; there is too much focus on surgery and adjuvant therapies and not enough follow up:
‘A disproportionate focus on surgical and oncological outcomes’
National Peer Review: brain and CNS...
Read full storyCategory: Charity News | Published: 4 July 2014
Lovely news - the Patient Information Forum has named brainstrust as member of the month. PIF is a great professional organisation that does a LOT of work with health and social care organisations, nationally, to drive patient engagement and understanding in healthcare.
In their own words, "PiF, together with its members, believes that high quality consumer health information should be available to everyone. Consumer health information isn’t just about leaflets and printed information. It’s much broader than that; it can be hospital signage, appointment letters, websites, informed consent, personal health records, patient education programmes, the list goes on. Good information engages people in their well-being, improves their experience and enables them and their families or carers to make choices about their lifestyle, treatment and the services they use."
You can read more about this latest accolade and what it means for brain tumour support,...
Read full storyCategory: Charity News | Published: 4 July 2014
We often get asked about Avastin for brain tumour treatment in the UK. Here's where things are at the moment...
Sadly, Avastin for brain tumours is not the Holy Grail we all want. Research shows that for brain tumour treatment, there is not enough benefit for patients.
The drug will not change the overall survival for brain tumour patients, and whilst it may delay progression free survival this comes with a significant symptom burden. At the international SNO conference in November 2013 the results of the phase 3 trial were announced; We think everyone knew that it wouldn't be good news but the disappointment was clear amongst the audience. This is what the results showed:
Bevacizumab (Avastin) added to the standard of care (chemoradiation [CRT] with temozolomide) as the first line treatment of glioblastoma did not improve median overall survival (OS), and, although the combination was associated with longer progression-free survival (PFS), it did not reach its prespecified target, according to results of the Radiation Therapy Oncology Group (RTOG) 0825 phase III study presented at Sunday’s Plenary Session (Abstract 1). Mark R. Gilbert, MD, of The University of Texas MD Anderson...
Read full storyCategory: Research News | Published: 26 June 2014
Following a high grade glioma diagnosis, Paula and Richard Middleton struggled to find a resource that would help them to explain Richard’s diagnosis to their young daughter. And so Toby the Teapot was born. This wonderful, quirky and beautifully illustrated book is now available online at:
Read full storyCategory: Charity News | Published: 25 June 2014