We are delighted to announce that Brain Tumour Support has received National Lottery Awards for All funding of £10,000 to enable the charity to run six Regional Health and Wellbeing Information Days.

“The need for our services is now greater than it has ever been. People are dealing with the closure of day centres, less access to meaningful activities, greater isolation and care needs being un-met,” said Rosemary Wormington, Head of Support at the charity, which has its head office in Thornbury, South Gloucestershire. “Our regional information days will encourage and support individuals to make positive lifestyle changes to improve their health and wellbeing. We have wanted to run these events for some time now and thanks to this wonderful grant from The National Lottery we can now start to put our plans into action.”

by Tina Mitchell Skinner
Founder and CEO, Brain Tumour Support

The last meeting in 2018 of the All-Party Parliamentary Group on Brain Tumours (APPGBT) has rounded off the year with an important question which affects all people diagnosed with a brain tumour and is the title of a new report – ‘Brain Tumours – a cost too much to bear?’

The official launch of this report at the General Meeting on Tuesday evening brought together people from all walks of life, because as we know, brain tumours don't discriminate.

Whilst a review of the APPGBT inquiry into the economic and social impacts of brain tumours was discussed, most of the meeting was consumed with further testimonies from people who desperately wanted to be heard. Their stories were heart-wrenching and some of their experiences almost unbelievable.

Published today by the All-Party Parliamentary Group on Brain Tumours - a report about the financial impact of brain tumours.

Our CEO and Founder, Tina Mitchell Skinner and our Ambassador Heather Taylor Nicholson have regularly attended APPG meetings and are there at the launch today.

Many of the people we support contributed to the evidence for this report, which concludes that the average household affected by a brain tumour will be financially worse off by £14,783 per year versus £6,840 for all cancers.

The root cause of these high costs, says the APPG, is that no significant scientific breakthroughs have occurred in the brain tumour sphere for decades. The limited treatments that are available, at best, extend life and do little to ameliorate the debilitating effects of a brain tumour.

Click here for the full report: https://bit.ly/2Q7SKnN

The Inspiration, a band that has reformed after 30 years apart, has released a single called Golden Sun with 100% of sales going to Brain Tumour Support. The band members wanted to do something special for Garry Brandrick, the brother of the lead singer Marc Brandrick, after Garry was diagnosed in December 2017 with a brain tumour.

Garry is 62, and his passion in life since 2005 has been the charity he set up which helps people with a history of issues such as addiction, homelessness and offending to access employment and education. When not working, he loved wild camping.

But the brain tumour has changed all that. Garry has had to step back to an advisory role at work because he can’t drive and finds it hard to use a keyboard. He can no longer go wild camping on his own in case he has a fit. He has problems with short-term memory; he gets tired easily; he finds it difficult to focus and he has lost a lot of confidence in his own abilities.

Bookings are now open for the Brain Tumour Support Patient and Family Weekend which will be held 22nd - 24th March 2019. 

This is the eighth support weekend we have run, and each one has proved to be immensely valuable and memorable on many levels for those attending. It is a unique opportunity to spend time with and learn from other patients and carers, and clinicians, medical professionals and support staff in a comfortable and relaxed environment.

See the website for more information.

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by Tina Mitchell Skinner
Founder and CEO, Brain Tumour Support
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At a recent meeting of the European Association of Neuro-Oncology (EANO) in Stockholm, Sweden, it struck me that within our community, in the midst of our desperation to find a cure for patients who are diagnosed with malignant brain tumours, we can often overlook the other important factors which arise as a result of a diagnosis.

Each time this community of clinicians, nurses, scientists, patient advocacy groups and other professions meets, we find that there is nothing new that we can report upon. More monies have been allocated to research and, as we wait for these outcomes, in the meantime what is happening to the patient?

Brain Tumour Support has launched its "Stars for Support" Christmas campaign with the aim of raising funds to enable the charity to help more families affected by a brain tumour diagnosis.

Volunteers across the country have been knitting beautiful sparkly stars for the appeal. Every time someone sponsors or buys a star, one of these lovely Stars for Support will be hung on a Christmas tree in the charity's head office in Thornbury. These stars can be dedicated in the name of someone affected by a brain tumour diagnosis.

"Whether in support or celebration, in memory or in tribute, it is a simple and personal gesture which will also help us to help others," said Tina Mitchell Skinner, founder and CEO of Brain Tumour Support. "There are more than 100,000 people in the UK living with a brain tumour. We currently support more than 2,000 of these and we urgently need to help more brain tumour patients and their families."

by Rosemary Wormington
Head of Support, Brain Tumour Support
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This month, The Christie in Manchester has been gearing up to receive the first brain tumour patients to be offered proton beam therapy treatment in the UK.

Up until now those patients meeting the necessary criteria for proton beam therapy would have been sent to hospitals in either Germany or America. 

As Brain Tumour Support expands, the charity has recruited three new Brain Tumour Support Workers and a regional Volunteer Coordinator.  

"We wholeheartedly welcome Sarah Erskine, Jayne Hodges, Trish Moroney and Narinder Gill to our team," said Tina Mitchell Skinner, CEO and Founder of Brain Tumour Support. "It is always so exciting to have new members of our team, with each one bringing new perspectives, different skills and fresh ideas to our growing organisation."

by Tina Mitchell Skinner
Founder and CEO, Brain Tumour Support

Last week was Remember a Charity Week and it brought to mind when my husband and I discussed our wills. We were both only 35 years old and had just been told he had a brain tumour.

I realised very quickly that there were so many extra things to consider alongside his surgery and oncology care. It felt as if the emotional side to his illness was something I had to deal with alone, and then of course there were the practical issues of a life ahead as a widow. As the months went by and the realisation dawned that his life was being cut short, we knew we would have to have some difficult conversations.
 
How was I going to cope financially, practically, emotionally and with a five-year-old son, who was too young to comprehend the enormity of what was soon to happen in our world?