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News archive    2013   
  • Liz is a Cross Solent Swimmer for brain tumour support

    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.

    Liz Eldridge swims the solent for brainstrust brain tumour support

    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...



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    Category: Fundraising News | Published: 17 July 2014
  • A Community for professionals interested in neuro-rehabiliation in brain tumour patients

    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...



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    Category: Charity News | Published: 4 July 2014
  • brainstrust is the Patient Information Forum's 'member of the month'

    PIF_logoLovely 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,...



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    Category: Charity News | Published: 4 July 2014
  • Avastin for brain tumours in the UK

    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...



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    Category: Research News | Published: 26 June 2014
  • Toby Teapot's Daddy has a poorly lid...

     

    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:

     

    http://www.amazon.co.uk/gp/offer-listing/B00KAUWXTG/ref=sr_1_8_olp?s=books&ie=UTF8&qid=1400264020&sr=1-8&keywords=childrens+brain+tumour&condition=new

     

    Every 



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    Category: Charity News | Published: 25 June 2014
  • Help children with a brain tumour: York's Apollo Festival is this weekend

    apollo festival york 2014


    This weekend, on the 21st June 2014, the Apollo Festival kicks off at York Sports Club, Clifton Park.


    The event includes 4 Music stages with live sets from Reverend and the Makers, Mark Morris of the Bluetones, and Chris Helme of the Seahorses.

    To find out more, visit www.apollofestival.co.uk

    This is a great opportunity to have a great day out and support our collaboration with the Smiley Riley Fund - all funds raised will help us to reach more children, and their families, who are facing a brain tumour diagnosis. Find out more about our dedicated 'little brainstrust' support here: www.brainstrust.org.uk/little-brainstrust/

    You can see some of the great photos from our most recent Meet Up for children with a brain tumour over on the Smiley Riley website: 



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    Category: Fundraising News | Published: 18 June 2014

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