Archive for February, 2010
Dorset Brain Tumour Support Groups
The charity Hammer Out run a support group for brain tumour patients at the Springfield Hotel in Wareham.
Time:
Meetings are held on the first Tuesday of every other month 1.30-3.00pm.
Contact:
Contact Anne Coles on 0845 450 1039, or Jason Bowie on 01202 263072
Location:
The Springfield Hotel, Grange Road Wareham BH20 5AL
February 18, 2010
Posted in: Dorset 
Wear a Hat to Work for Brain Tumours
"Wear A Hat To Work" in March 2010 and raise money for research
Brain Tumour Action is partnering with the umbrella group charity Brain Tumour Research and other member charities to use the month of March 2010 to raise awareness and funds for brain tumour charities. We are hoping that everyone will join us to wear a hat on a date in March and help us with this campaign.
The impossible can be achieved
In the UK, five year survival for leukaemia is now 80% compared to 20% thirty years ago and in most cases there is a cure. This is because of the sterling work done by charities such as Children with Leukaemia and Leukaemia Research with the support of celebrities like Gary Lineker to raise awareness and funds for research into leukaemia. The impossible has happened, families are seeing loved ones beat the disease and live much longer than they would have ever dreamed possible.
Brain tumours are sometimes called a Cinderella disease, because so little is known about them. This means they are also forgotten when it comes to allocating funds for research. Yet, more children and people under the age of 40 die of a brain tumour than leukaemia or any other cancer and five year survival is still only 14%.
Can you help?
Would you, your workplace, club or organization consider having a ‘wear a hat’ day to help us with our brain tumour awareness month in March? Would you consider asking people to wear a hat and bring in a pound or two on any day in March to suit you? If you want to do more than this we would be delighted. Here are links to four posters and a guide to running your Wear A Hat Day:
Guide To Running Your Own Wear A Hat Day
Please note that Poster One and Poster Two are intended for use in schools, and Posters Three and Four are designed for the workplace.
Monies raised will be split between Brain Tumour Action and Brain Tumour Research. Cheques to be made payable to Brain Tumour Action (we will forward monies to Brain Tumour Research).
If you can help in this way we would also love you to send any photos from the day to upload to our website. Please contact me on administrator@braintumouraction.org.uk
February 15, 2010
Posted in: News from BTA
Links
Charities associated with brain tumours: support, information and research.
http://www.braintumourresearch.org/ Brain Tumour Research
http://alisdream.f2s.com/ Ali’s Dream
http://www.andreasgift.org.uk/ Andrea’s Gift
http://www.annashope.co.uk/ Anna’s Hope
http://www.brainandspine.org.uk/ The Brain and Spine Foundation
http://www.wayahead-btrc.org/ Brain Tumour Research Campaign
http://www.brainstrust.org.uk/ Brainstrust – The Meg Jones Brain Cancer Charity
http://www.brainwaves-ni.org/ Brainwaves – Northern Ireland Brain Cancer Charity
http://www.cbtrc.org/ The Childrens’ Brain Tumour Research Centre
http://www.elliestrust.org/ Ellie’s Trust
http://www.hammerout.co.uk/ Hammer Out
http://www.levisstar.co.uk/ Levi’s Star
http://www.btbuddies.org.uk/ BTBuddies
http://www.libertyrosetrust.org/ The Liberty Rose Trust
http://www.braintumouruk.org.uk/ Brain Tumour UK
http://www.cccrf.co.uk/ Christopher Clarke Cancer Research Fund
http://www.andrewmccartneyphotos.co.uk/ The Andrew McCartney Trust Fund for Brain Tumour Research
http://www.braintumourukeast.co.uk/ The Eastern Counties Arm of Brain Tumour UK
http://www.meningiomauk.org/ Meningioma UK
http://poppyfieldsappeal.co.uk/index.asp Poppy Fields Charity
http://www.jamieswish.co.uk/ Jamie’s Wish
http://www.pcmt.org/ The Peter Culverhouse Memorial Trust
http://afrt.org.uk/afrt/index.htm Alison Fracella Research Trust
http://www.edevansfoundation.co.uk/index.html The Ed Evans Foundation
International information and campaigning organisations
http://www.virtualtrials.com/ Virtual Trials – Information about clinical trials worldwide
http://www.theibta.org/ The International Brain Tumour Association
http://www.abta.org/ The American Brain Tumour Association
http://www.braintumor.org/GeneralMenu/ The National Brain Tumor Society (USA)
http://www.brainlife.org/index.htm BrainLife – current neuro-oncology
United States charities and foundations
http://www.tugmcgraw.org/home.asp The Tug McGraw Foundation
http://www.thekortneyrosefoundation.org/ The Kortney Rose Foundation
http://www.charleswarrenfoundation.org/ The Charles Warren Foundation
http://www.tbkf.org/index01.htm The Brad Kaminsky Foundation
http://www.hopewithsupport.org/ Hope With Support
http://www.ssbtr.org/index.php?action=gid_1 Students Supporting Brain Tumor Research
http://www.brain-treatments.net/ Brain Tumor Treatments
http://home.earthlink.net/~sdepesa/ Living With a Malignant Brain Tumor – a Patient’s Guide
General cancer assistance, support and information
http://essentialaids.com/ Essential Aids: The UK’s Online Shop for Living Aids and Accessories
http://www.chill4us.com/news/index.php Chll4us – online forum for carers from all backgrounds
http://www.neurosupport.org.uk/ The superb Neurosupport Centre in Liverpool
http://www.winstonswish.org.uk/ Winston’s Wish – the charity for bereaved children
http://www.maggiescentres.org/maggies/maggiescentres/home/home.html Maggie’s Centres – magnificent, award-winning drop-in centres for cancer patients of all kinds, ages and backgrounds. Essential.
http://www.cafamily.org.uk/index.php?section=861 Contact A Family: for families with disabled children
http://www.riprap.org.uk/ Riprap – a website for children of parents with cancer
http://www.yct.org.uk/home.aspx The Youth Cancer Trust – free holidays for cancer patients aged 14-30
http://www.carersandbraintumours.org/ Carers and Brain Tumours – magnificent support and advice for carers in particular
http://www.macmillan.org.uk/Home.aspx Macmillan Cancer Support
http://www.cancerbuddiesnetwork.org/ The Cancer Buddies Network – contact and share with people going through the same experiences
http://www.anac.org.uk/ New Approaches to Cancer – holistic approaches
http://www.neurosupport.org.uk/working.html The Working Life Service – staying in work after your diagnosis
http://www.neural.org.uk/ The Neurological Alliance
http://www.teenagecancertrust.org/ The Teenage Cancer Trust
http://www.click4tic.org.uk/Home Teen Info on Cancer
http://www.rarercancers.org.uk/ The Rarer Cancers Forum
http://www.cherylbroyles-gbm.com/ Life’s Mountains by Cheryl Broyles
http://www.beatson.scot.nhs.uk/content/default.asp?page=s17 The Beatson West of Scotland Cancer Centre, Glasgow
http://www.basiccharity.org.uk/ Brain and Spinal Injury Centre
http://www.neurooncology.scot.nhs.uk/ SANON – the Scottish Adult Neuro-Oncology Network
February 13, 2010
Posted in: Links
Why it can be hard to convince the professionals
The Press Association reports a case in which a worried mother was able to convince her child’s doctors to agree to a brain scan – but only after a fortnight of multiple appointments and the child’s worsening illness.
Carly Hornbuckle was told four-year-old daughter Bella Flint’s condition was nothing serious. But the worried 25-year-old did her homework online and realised Bella could be suffering from a brain tumour. After finally convincing doctors of the seriousness of her condition, a brain scan revealed a tumour the size of a golf ball. Bella was suffering from Medulloblastoma – a brain tumour found in the cerebellum, which controls movement and balance.
There are two issues here that will be familiar to parents of children with brain tumours:
- Many GPs come across brain tumours rarely, if at all.
- Informed parents face an uphill struggle to convince medical professionals that their concerns are valid and ought to be listened to.
Bella Flint’s mother did the most important thing of all – keep going. Bella’s scans revealed the truth about her illness, but getting that far took persistence and the courage to seek a second opinion: that all-important second opinion secured Bella’s referral to Leicester Royal Infirmary for tests, and, ultimately, the scans.
You can read more about Bella and Carly’s experiences, and keep up to date with her condition, at the Tinkerbella’s Wishes website.
February 9, 2010
Posted in: News from BTA
