Welcome to BTA
Annual General Meeting 2015
New Members Most Welcome
The next AGM of Brain Tumor Action will be held on Tuesday 27th, January, 2015, starting at 6.00 pm. at the offices of French Duncan, 56, Palmerston Place, Edinburgh, EH12 5AY. We would be delighted if you could join us especially if you are interested in getting involved with a small, friendly charity where everyone has an equal voice and all the work is done by volunteers.
We look forward to meeting you.
SAIGON TO ANGKOR WAT
Well done, Katherine – you did it! Hope you’re not too saddle-sore after such a marathon cycle ride. All the money you raised will go into the Leighanne Easton Fund to promote greater awareness and earlier detection of brain tumours in young adults.
Judgement Day Tennis
This is a shortened version of the highly entertaining article just sent to us by Chief Organiser Jonathan Russell. The full text will appear in our next issue of KITE where you will find out exactly how it happened and who won this epic contest. Many thanks to all who helped along the way. It was a fantastic effort on everyoneâ€™s part and weâ€™re so grateful for your support.
â€śThey came, they played, they even suffered ice bucket challenges – and they raised more than ÂŁ1900 for Brain Tumour Action in the process. Two tennis coaches decided to settle a drunken bet on who would win a best-of-three-sets singles match to raise money for the charity. Euan McGinn and Jonathan Pankhurst have been team-mates in their county side for years but when they argued on a night in the pub there was only one way to settle it. And McGinn v Panky – Judgement Day was born. There was even a song recorded which can be heard at https://www.youtube.com/watch?v=q42zvBanJLo
After the match both players received a trophy to commemorate their day from Caleb Duffy, 10, who has been battling a brain tumour for several years.
Thanks to every single spectator who came down to Giffnock and also to everyone who donated money, either online or at the match. But most of all thanks to the two heroes of the day, Euan McGinn and Jonathan Pankhurst. No idea what you were thinking when you agreed to do this but everyone’s glad you did! Congratulations.â€ť
A GREAT DAY OUT
Seventy three of us met up at Bair Drummond Safari Park on Saturday 31st May for a very special day out in glorious sunshine. Participants came from all over Scotland – Grampian, Strathclyde, Lothian, Fife and the Borders. Everyone, including the Brain Tumour Action team, has been affected directly or indirectly by a brain tumour in our immediate families.
The Blair Drummond staff were absolutely brilliant. They provided a wheelchair-accessible marquee, our own picnic tables, cordoned-off parking area and delicious picnic lunch. Brain Tumour Action brought ball games, an outsized Connect Four, arts and crafts and plenty of young volunteers to help out. The design-your-own wild animal masks were a great hit with all ages – see below! The Brain Tumour Charity which co-financed this event, were represented by Gus Ironside, Operations Manager for Scotland and we are most grateful for his enthusiastic support.
For some families this was the first outing they had been able to have together for a long time. Their appreciation – â€śawesomeâ€ť â€śreally funâ€ť â€śitâ€™s been a wonderful dayâ€ť – made it all worthwhile.
CEILIDH IN HADDINGTON
The March Ceilidh held in memory of John Hopkins raised an incredible total of ÂŁ1,900 for research into glioblastomas.
Many thanks to all who contributed by coming along to this brilliant evening which was superbly organised by Irene with support from Janice and Sheila.
Thanks, too, to those who donated generous prizes for the Raffle and to the fantastic support throughout of East Coast Radio.
Look what Andrew did!
Last December Andrew Conlon, aged five, completed the Santa Dash in Glasgow with his Dad, Michael. They made a donation to Brain Tumour Action and we were delighted to present Andrew with a special Certificate to mark his brilliant achievement.
The Marathon to Beat all Marathons!
Alison Whitley has been running marathons and other races throughout 2013 in memory of her friend, Susan Green who died last year. She has nearly completed her target of – wait for it – 2013 miles. What an achievement! Many congratulations Ally, from all of us at Brain Tumour Action. We know it’s been incredibly tough at times but you and Stitch just keep going.
Dollar Academy – Sponsored Walk
Dollar Academy have been out in the hills – a massive sponsored walk – with Pipers – for Brain Tumour Action. To everyone who took part – thank you so much for your fantastic support and we hope you had a great day!
The four Phillips brothers ran the Edinburgh Marathon to remember their good friend Fergus Hyslop.
Here is what they told us:
“Our friend Fergus Hyslop died from an astrocytoma tumour last year. We are running in the Edinburgh Marathon in his memory. We are four brothers from Edinburgh (though two of us live in Hong Kong these days). We all went to Davidsons Mains Primary, and the Royal High School with Ferg. We are ‘Team Ferg’.”
They raised an amazing ÂŁ2,300. Thank you so much for your brilliant joint effort!
Campaigning at Holyrood
The Cross Party Group on Cancer at the Scottish Parliament.
At the Cross Party Group on Cancer Meeting held in The Scottish Parliament on the 12th of June representatives from Brain Tumour Action spoke about the widespread lack of recognition and understanding of brain tumours which leads to a disturbing variation in patient and carer experiences.
Brain cancer is rare and often not well understood, even within the clinical community. Specialised interventions are needed at various points in the disease process and patients often have very complex needs which places a huge burden on carers. This is often accompanied by feelings of fear, guilt and isolation. The charities and support groups which exist are mostly small and do not receive any central funding.
First-hand accounts given by patient and carer representatives poignantly illustrated the difficulties they have encountered, often over many years.
There is an almost complete lack of wholistic, individualised care programmes and an urgent need to improve communication among clinical providers and social services within the community.
Brain Tumour Action calls on The Scottish Parliament to support their work.
Our Ongoing Support for Paediatric Research
Representatives from Brain Tumour Action and the Astro Low Grade Glioma Fund met up in London at the Blizard Institute on March 14th. We were given an extremely warm welcome, not to mention both a delicious lunch and tea. The staff gave presentations about their current findings and then took us on a tour of the laboratories where we were able to view some of the work for ourselves.
The research team, led by the indefatigable Professor Denise Sheer, is studying the epigenetics of childhood low grade brain tumours. We feel greatly privileged to be able to part-fund this groundbreaking work for a second year.
If you are reading this then please consider making a donation to Brain Tumour Action so that we can continue our support for their valuable work.
Just think: your generosity now may help to save a childâ€™s life not so far into the future!
Five pupils from The Royal High School of Edinburgh were the runners up in their schoolâ€™s Youth and Philanthropy Programme this session. They became actively involved with the Edinburgh Support Group, attending meetings and interviewing members. They then gave an outstanding final presentation on brain tumours which demonstrated how they impact the lives of patients, their families and friends. We are hugely appreciative of the commitment and maturity with which they got involved in the work of our Charity. Many congratulations to them all for their efforts.
Taking the Message to Holyrood
Michael Matheson, the Scottish Minister for Public Health, visited our exhibition stand at the Scottish Parliament where we promoted Brain Tumour Awareness Week. See page 3 of our new KITE.
New Booklet Out Now
Our patient support booklet, Radiotherapy for Brain Tumours, has now been fully revised and updated.
Full of useful information it takes the reader through the whole process from planning to completion in clear, comprehensible language.
It is available on request from Brain Tumour Action and it can also be downloaded from our website. SeeÂ Radiotherapy for brain tumours.
We hope you will find it helpful