News archive 2015
We know from speaking with our community that fatigue is a huge issue when living with a brain tumour, and that it effects quality of life.
In a new step towards addressing fatigue, our Director of Services and Policy Helen has been a key player in a new Cochrane Collaboration review published last week, entitled ‘Interventions for the management of fatigue in adults with a primary brain tumour.’
Although it’s still early days for this strand of clinical research, it’s a step in the right direction towards finding how we can help people experiencing fatigue manage their symptoms, and the work is still underway.
Soon we will be publishing our own guide to managing fatigue which will, alongside our...
Read full storyCategory: Research News | Published: 26 April 2016
Our amazing supporters Karen and Damyon Garrity from Stockport, who have raised over £28,000 for brainstrust over the years, are now working to raise money for a new, special project.
The couple are planning to build a magical garden at Tithe Barn School in Heaton Moor in memory of their son Lucas, who they lost to a brain tumour in 2013.
Lucas's mum Karen says:
“Lucas is sorely missed by all who knew him, and we had been looking for an appropriate way to remember his love of life, happy caring nature and his sunny smile. Our vision is to develop a child friendly community garden with outdoor learning, which is fun and educational in an interesting environment”
The garden will feature a rainbow path with additional lighting making the garden available for use in the evenings and will be designed in collaboration with Dreamscape...
Read full storyCategory: Fundraising News | Published: 30 March 2016
brainstrust is working with Epilepsy Research UK to identify research priorities for tumour-associated epilepsy
Epilepsy can have a huge impact on people living with a brain tumour. In fact, up to 85% of patients with a low grade glioma experience seizures and up to 60% with a high grade.
We know how devastating the condition can be. The loss of independence, living with uncertainty, and the impact that taking medication has on top of a brain tumour diagnosis can be overwhelming.
That’s why we’re delighted to be working in collaboration with Epilepsy Research UK to identify the key research priorities for tumour-associated epilepsy. The collaboration began at a recent international workshop entitled 'Tumour-associated epilepsy: bridging the translational gap’, which shared the latest research in the field.
We’re now working together with leading researchers and clinicians to address the challenges that a diagnosis brings, so that people living with tumour-associated epilepsy can live the best quality of life...
Read full storyCategory: Charity News | Published: 30 March 2016
It has recently hit the headlines that a new discovery in immunotherapy could give treatments the precision they need to be more effective in treating cancer.
What does this mean for brain cancer?
Immunotherapy as a cancer treatment has waxed and waned since 1900. Current immunotherapies for brain cancer fall into six broad categories: cancer vaccines, checkpoint inhibitors, oncolytic virus therapy, adoptive cell therapy, adjuvant immunotherapies, and monoclonal antibodies. so there is much activity around this as a potential treatment. However, there are always caveats when there is a big media noise around 'game changing' treatments for cancer. Brain cancer is particularly intransigent and there are so many different types of brain tumour. At the moment we know that there are even 6 subsets of a glioblastoma brain tumour. It can work BUT it is hugely expensive as each treatment is personalised to each individual. And of course, not each individual will be responsive to the treatment, which can also be highly toxic.
Read full storyCategory: Research News | Published: 10 March 2016
Shaun Skinner, one the amazing people who we’ve supported over the years, is taking on a Man v Food challenge at Beefy Boys in Hereford later this month.
“I was diagnosed with a terminal brain tumour in 2007 and was given 4 years to live - so yes, I've been very fortunate, far more than many good friends I've lost in that time. In January, I was told the tumour had started growing aggressively again and have now been given 12 months to live. I’ve compiled a list of things I want to achieve within that time. One is to raise some money for brainstrust, the charity that have walked alongside me throughout that time. So I want to say thanks to them, in as mad a way as I could think of.”
Shaun- you’re amazing.
Get behind Shaun as he goes up against food for brain tumour support.
Visit his Make JustGiving page to make a donation today.
Read full storyCategory: Fundraising News | Published: 2 March 2016
We know how lonely it can be living with a brain tumour. We also know how much it can help to be with others who truly understand.
We organise Meet Ups for the brain tumour community to get together, share experience and have some fun. No matter where you are on your journey or what role you have (such as carer, patient, health care professional) come along, feel less alone and become better connected.
Here are some Meet Ups we have coming up in the near future. Please join us- we always love to see you.
Read full storyCategory: Charity News | Published: 1 March 2016