News archive 2013
In partnership with the clincial and research community, we are looking for your questions about living with a brain tumour to help direct areas of research that are important for patients in future.
At the moment, brain tumour research in the UK doesn't feel very unified. We are working with all the right people, and of course that includes patients and carers to solve this.
How? Well it's simple. We need your questions.
You ask the questions that are important to you about any aspect of living with a brain tumour. We then review the questions to identify the top ten priorities according to the brain tumour community. These priorities then drive the research agenda in the UK, making a difference to all.
This project is so simple, yet it willl be cohesive, effective and impactful - setting the agenda for brain tumour research for years to come.
For example, you may have a question about any of the following:
- Brain tumour diagnosis
- Brain tumour treatment
- Tumour-related symptoms (e.g. epilepsy, headaches, poor sleep)
- Palliative care
- End of life...
Read full storyCategory: Research News | Published: 28 February 2014
Kayleigh Street is one of brainstrust's superstar patients who we are helping to get back on top of things following a brain tumour diagnosis. Kayleigh held her own #TEAFEST event on Saturday to raise some funds and awarenes for brain tumour support. Here's what she had to say...
I held my #TEAFEST this Saturday (22nd) - a little earlier than the official dates, but this was to help my teaching friends fully enjoy the event before they headed back to school after half term.
I invited family, friends and colleagues to join me in drinking tea, eating cake and most importantly, raising money for brainstrust in my living room. My aim was to raise enough money to pay for one Brain Box (which I was lucky enough to receive after my diagnosis, way back in October '13.)
We haven't finished counting up all the loose change yet, but some of the donations were extremely generous and we've definitely passed the £100 mark, which is amazing. People who were unable to come have pledged to donate directly through the website. Everyone...
Read full storyCategory: Fundraising News | Published: 25 February 2014
Great news for our community in Scotland, and a sign of our enduring commitment to helping brain tumour patients, their carers and our supporters North of the broder, today we can share that we are officially a registered charity in Scotland.
Our new number, sent through by the Office of the Scottish Charity Regulator is SC044642.
We have a large, and growing community of patients across Scotland, all ably assisted by our Support Specialist, Carol Cochrane. We are committed to a number of exciting projects that stand to make a real difference to people battling a brain tumour in Scotland.
Moving forward, and with your support, we will:
- Hold more Meet Ups across Scotland (each one costs between £300 and £500)
- Build capacity to make our phone and email support response times quicker than ever (we’re already pretty fast mind!). It costs us £120,000 a year to keep the service up and running.
- Hold training, education and networking events for brain tumour carers in Scotland (each day costs around £2000)
- Employ more people to support...
Read full storyCategory: Charity News | Published: 13 February 2014
Lorna Keen and Jacqui Thake are cycling 500km across Rajasthan in India to raise funds for our work to help brain tumour patient, all in memory of Jacqui's friend Elaine Turton, who tragically died of a brain tumour.
The pair tell us that training has been extremely tough, particualrly with the awful winter months of wind, cold and rain, rain, rain. Jacqui and Lorna have been thwarted by floods, punctures and illness, but still they are battling on and are confident that they will be up to the challenge, which starts on Valentines Day, February 14th.
Lorna says, "We know people are inundated with pleas for money for good causes but we would be grateful for any amount, however small, that you can spare to spur us on to complete the challenge in aid of this very worthwhile charity."
You can check out their JustGiving page here: www.justgiving.com/LornaKeenandJacquiThake
Good luck ladies!
Read full storyCategory: Charity News | Published: 7 February 2014
We know how hard it can be when you are told that you have a brain tumour. Not only are you dealing with the prospect of a cancer diagnosis, but also an often severe long term neurological condition. Life can be particularly tough for your carers as the condition can change the very person their loved one was.
Millions of people across the country are living with a neurological condition, and they all have specialist needs. However, there is a wealth of knowledge amongst specialist practitioners and organisations like brainstrust that are able to provide support for people caring for those with these conditions.
In the North of England, our Sheffield team have been working with representatives of other neurological organisations across Yorkshire and the Humber to engage with and educate health and social care professionals.
On Monday 17th March, we'll be joining other members of YHANO (Yorkshire & The Humber Association of Neurological Organisations) to put on a Neurological Education Day for generic health and social care practitioners providing information about a range of neurological conditions.
This study day is for caring professionals who, as part of their role, may come into contact with people living with long term neurological conditions. The event will provide a...
Read full storyCategory: Charity News | Published: 27 January 2014
At brainstrust everything we do is about improving patient and carer wellbeing. We know that when you're told you have a brain tumour, the fight has only just begun. This is reflected in our work in brain tumour research.
We get involved in research when it makes a real difference to those living with a brain tumour. Some examples?
Well we're currently engaged in 15 different clinical trials and research studies.
Helen, brainstrust’s Director of Services, sits on the National Cancer Research Institute (NCRI) Brain Tumour Clinical Studies Group, where her role is to make sure that patients’ views and experiences are considered at all times when a trial is being designed or run. It is all too easy for researchers to otherwise get bogged down in the research, forgetting about the people they’re ultimately doing it for.
As well as this, we are often invited to represent patient voice in other brain tumour research. We take this role very seriously and always make sure we reflect the views of the brain tumour community. It is a heavy responsibility but offers a real way of making things better for brain tumour patients.
Here are just a few examples of what we’re involved in:
- A clinical trial led by the neurosurgical team at Addenbrookes...
Read full storyCategory: Research News | Published: 13 January 2014