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All Party Parliamentary Group for Brain Tumours

Linda and AngelaABTF Trustees Angela Scrutton and Linda Rickford attended the All Party Parliamentary Group Brain Tumour meeting at the House of Commons on 12th March 2019. The meeting heard about the latest political and policy updates relating to brain tumours, including the Tessa Jowell Brain Cancer Mission (TJBCM). Dr Nicky Huskens, Director of the TJBCM, and Jess Mills, Tessa Jowell's daughter, both addressed the meeting.

Continuing a theme from the 2018 ‘Inquiry into the economic and social impacts of brain tumours’, the meeting also heard from Vicky Ringer, a doctoral researcher at the University of Leeds, about how a brain tumour diagnosis can affect the education of paediatric patients.

It was a very positive meeting, with so many MPs, professionals and charity members in attendance...and gives us all reason to hope.

In vitro evaluation of the effect of cannabidiol as an adjuvant therapy for paediatric brain tumours: Update December 2018

The Astro Brain Tumour Fund have contributed towards a cannabinoid research study into children’s brain tumours, and over the last six months, work on the project has progressed at a pace. Most of the cell lines under investigation have been growing very well and therefore substantial progress has been made. A medical student join our team between September  - December 2018, which increases our research capacity and also helps us raise awareness of brain tumours and cannabidiol research amongst clinicians of the future. 
See full update

Latest Newsletter

Please see our latest newsletter which is packed with exciting information including latest reports on research and fundraising activities.

Cancer Research UK Brain Tumour Conference

Katie and Matthews FriendsAt the first ever Cancer Research UK Brain Tumour Conference in London this week, we are delighted to say that our most recent ketogenic diet results were chosen to feature in the poster presentations. Ketogenic Dietician Sue Wood, pictured here with Astro Brain Tumour Fund founder Katie Sheen, presented her findings to an audience from across the globe: 25 adult brain tumour patients who chose to participate in the study, using ketogenic dietary therapy alongside their standard treatment, saw various benefits including reductions in seizures and improvements in fatigue. 

The free ketogenic diet support service for all brain tumour patients is co-funded by Matthew’s Friends and Astro Brain Tumour Fund, with all dietetics support being supplied by Sue and the amazing team at Matthew’s Friends. If you would like to donate to ensure the continuation of this vital service, please visit or if you would like to benefit from the service yourself, please visit

Brain Tumour Research Charity Members’ Workshop
13th/14th May 2018

Katie Sheen and Mary & Robbie Burton, ABTF trustees, attended the workshop, it was a very informative event and it was great to link up with trustees of other brain tumour charities to swap ideas and offer support.
Brain Tumour Research Workshop

Attention parents of paediatric brain tumour patients

My name is Briony, I am a Trainee Clinical Psychologist from the University of East Anglia. I am inviting parents to take part in a study that is investigating post-traumatic stress symptoms in parents of children who have been diagnosed with a brain tumour. The study is an anonymous online survey and will take approximately 20 minutes to complete.

The researchers are looking for parents who meet the following criteria:

  • Parents (above the age of 16) of children who have been diagnosed with a brain tumour
  • Parents should be living in the UK
    The child should be between 4 years and 16 years at the time of completion
  • The child should be from 6 months post diagnosis to five years post diagnosis
  • The child should be under a paediatric oncology service

Both parents/caregivers of the same child are encouraged to take part (but it is not a requirement that both parents need to take part)
Parents who find it difficult to understand written English would not be suitable for the current study due to the questionnaires being used. The research team are also not asking parents of a child who is in palliative care to take part.

If you would like more information about the study, please contact Briony on

Before you complete the study, there is an information page for you to read about what the study will involve. If you read this, and consent to the study, you will then be able to complete the survey.

The study link is copied below:
Post-traumatic stress in parents

New Research to test effect of Cannabidiol on Childhood Brain Tumours

As a charity, we actively seek out ways to support research into more gentle, less toxic ways of treating cancer. Whilst finding a cure is obviously our main focus, we also want to ensure that any cure leaves patients with an excellent quality of life afterwards. We also listen carefully to everyone whose lives are touched by brain cancer, and if they are reading anecdotal evidence about treatments on the internet, we encourage research to establish an evidence base for those treatments. 

We have been co-funding a Dietetics Support Service with the charity Matthew’s Friends since 2014 in order to gather data about the effectiveness of using a ketogenic diet alongside the current standard of care, and that data is now being used to establish the first clinical trial of its type in the UK.

To now fund research into the potential efficacy and safety of cannabis oil for brain tumours patients will, we hope, start a similar process towards clinical trials.  Without a strong evidence base for these new treatments, patients are stumbling in the dark, and as we are named after a star, we hope that our work brings light to that darkness.

The following is a press release with full details of the research:-

A non-psychoactive compound found in cannabis called cannabidiol is to be tested for its effects on paediatric brain cancer cells by experts at Nottingham’s world-leading Children’s Brain Tumour Research Centre.

In this its 20th anniversary year, the Centre needs to raise at least £100,000 to fund the new project and has just received generous kick-starts of £45,000 from Astro Brain Tumour Fund and £10,000 from the Jessica Hope Foundation.

The research and fundraising is being championed by 4-year-old William Frost and his family from Newark, Nottinghamshire. William was diagnosed with an ependymoma brain tumour 3 years ago and is being treated at the Centre.

William’s father Steve said: “We are proud to be supporting this important new avenue of research into children’s brain tumours. We were told half way through 2016 that nothing more could be done for William. We couldn't bear to accept the news and decided to look into alternative treatments. The two options we started were a low carbohydrate (ketogenic) diet and cannabidiol. Six months later William’s tumour had shrunk by two thirds. He is slowly improving and attending school part time”.

“Because we know how unpredictable his tumour type can be we couldn't just sit back and hope, which is why we championed this research project so that we can find out if the cannabidiol contributed to the reduction. We also set up to keep people updated on William’s progress and, more recently, to raise money for the project. 
“We are over the moon that Astro Brain Tumour Fund (who also support the ketogenic diet) have decided to significantly contribute towards the project, and also the Jessica Hope Foundation. We’re now hoping that the remainder of the funds can be found so that William and other families in our situation can benefit.”

Leading the research project, Professor Richard Grundy said: “Brain tumours are the biggest cancer killer of children in the UK but the disease receives less than 1% of the UK’s cancer research funding. New ways to treat childhood brain tumours are urgently needed to extend and improve the quality of life in malignant brain tumour patients so we are excited at the prospect of testing the effect of cannabidiol on brain tumour cells.

“Increasingly families are using CBD, often at great expense, presently there is no evidence that it might be of benefit or even what dose to use or how often. It is therefore very important to obtain objective scientific evidence of whether CBD is active against Children’s Brain tumour cell lines.”

The research team will grow cells from either ependymoma or glioma tumours under standard lab conditions but either with the addition of cannabidiol molecules or without. After 7 days the level of cell death will be measured and the presence of viable tumour cells in the two different assays analysed.

Cell staining will be used to see how many of the cells are dividing, whether the cells are undergoing cell death and also for a group of proteins which regulate the expression of genes – peroxisome proliferator-activated receptors (PPARs)]. These PPARs play essential roles in the regulation of cell differentiation, development, metabolism and the formation of cancer.

Professor Grundy said: “We expect the cells (brain tumour and normal brain) grown in our standard conditions to be healthy and actively dividing. We expect that normal brain cells grown in cannabidiol will remain healthy. However, we expect the brain tumour cells grown in cannabidiol to stop growing and die.”

This research will form part of the pre-clinical phase of the evaluation of the potential use of cannabidiol in paediatric brain tumours.

Taking Ketogenic Dietary Therapies and Cancer

Here is a video of Sue Wood, dietician, Matthew’s Friends, and Katie Sheen of Astro Brain Tumour Fund, discussing diet, cancer and the ketogenic dietary therapies.

Adult Low Grade Glioma Registry

Below is a message from Elizabeth Claus from Yale University, USA.  If there are any LGG patients in the USA interested in this study, you can contact Elizabeth at  Also see links below, including a questionnaire, for more information.

“To introduce myself, I am a faculty member at Yale University and working with a larger collective of glioma researchers to create an adult low grade glioma (LGG) registry that will collect germline and tumor samples as well as quality of life, treatment, neuro-cognitive and other data for (hopefully) at least 2000 LGG patients-we have been awarded startup funds from the American Brain Tumor Association (ABTA) as well as the National Brain Tumor Society (NBTS) and the IBTA has also been kind enough to publicize our efforts.

Thank you in advance for considering our study!!”

The International Low Grade Glioma Registry questionnaire

Elizabeth B. Claus, MD, PhD
Professor and Director of Medical Research
School of Public Health
Yale University,
New Haven, CT, 06511

Attending Neurosurgeon and Director of Stereotactic Radiosurgery
Department of Neurosurgery
Brigham and Women’s Hospital, Boston, MA 02115

Astro Brain Tumour Fund (ABTF) Research Update April 2016

Astro Brain Tumour Fund (ABTF) have had another successful year, with increasing numbers of supporters and imaginative fundraising events bringing in hugely appreciated funds to support research into finding a cure for low-grade gliomas. 

Over the last 15 years, ABTF has funded innovative research at the Children's Brain Tumour Research Centre, Queen's Medical Centre, Nottingham, Birmingham Children's Hospital and Institute of Child Health, Royal Marsden Hospital and Institute of Cancer Research, National Hospital for Neurology and Neurosurgery at Queen Square, London, Hull Royal Infirmary, Blizard Institute at Queen Mary’s, University of London, Wolfson Molecular Imaging Centre at The University of Manchester and The Walton Centre for Neurology and Neurosurgery.

Their laboratory based funding is currently focused at one of Brain Tumour Research’s Centres of Excellence, the Plymouth University’s Peninsula College of Medicine & Dentistry.

On the clinical front, ABTF remains committed to bringing new therapies to patients as quickly as possible. We are therefore working in close collaboration with the inspirational charity Matthew’s Friends, together funding a groundbreaking clinical support service for both low-grade and high-grade patients wishing to use ketogenic dietary therapy alongside their standard package of care and treatment.

These patients are being carefully monitored and their cases written up for potential publication in order to build the evidence base ready for the development of clinical trials that urgently need to be undertaken. Whilst benefits related to seizure control, memory, co-ordination and energy levels have been proven in children with epilepsy, it remains to be seen how well these can be reproduced amongst paediatric and adult brain tumour patients.

Research done in the USA on mouse models of brain tumours has demonstrated that the ketogenic diet may be able to halt tumour growth, and perhaps when combined with radiotherapy could instigate a cure: but it is a huge leap from mice in a laboratory to humans in a clinic and it is far too early to know if this is true, hence the reason why the clinical trials are so desperately needed.

 We must investigate all possible options that come to light, in order to establish which are worthwhile for patients to undertake.

If you would like to know more about ketogenic dietary therapy and the existing clinical support service for brain tumour patients, please see the Matthew’s Friends website at or call them on 01342 836571.

Ketogenic Therapy

Here is a very exciting and crucial step towards the possibility of the first UK based trials for the ketogenic diet as an adjunct therapy for brain tumours.

Please could you complete this short questionnaire about your views on whether or not you might want to try a modified version of the ketogenic diet? 

If you could also share this questionnaire as widely as possible amongst others in the brain tumour community, that would be hugely appreciated.

Launch of Fourth BTR Centre of Excellence

Tom ChapmanOn 24th September 2015, Linda Rickford, who is one of the trustees of Astro Brain Tumour Fund, and Emma Williams MBE, of the charity Matthews Friends, attended the launch of the fourth Centre of Excellence Brain Tumour Research Centre.

This is a ground breaking partnership with the Imperial College Healthcare NHS Trust (London). This means that BTR are more than halfway towards their goal of funding a network of 7 dedicated research centres around the country, while challenging the Government and larger cancer charities to invest more in to brain tumour research.

Also pictured is the Wall of Hope. Each day of research costs £2,740 and is represented by unique tiles on the wall which are dedicated to patients, their families, friends and corporate sponsors. For more information about how you can sponsor a day visit

ABTF are working closely with Matthews Friends to help support people with low grade gliomas who are keen to follow the ketogenic diet.

Ketogenic Therapy – a report by brain tumour patient, Tom Chapman

13th July 2015

Tom ChapmanThe following is a report from Tom Chapman who has been following the ketogenic diet since June 2013.

“One year plus from incredibly successful surgery and radiotherapy for a brain tumour, I felt it was time to summarise the experience and in particular the part that the ketogenic diet supported by the Astro Fund may have played in it.

Round One… Radiation
I was first diagnosed with a brain tumour in summer 2007. Oligodendroglioma in the left temporal lobe, ping-pong ball size, affecting reading, speaking and thinking. Not good for anyone, and as a church minister those are all things I needed to do… But – crucially – Grade 2 not grade 3 (median life expectancy 8 plus years, not two). Six weeks of radiotherapy lead to five years of relative good health, functionality, work, driving and even another child!

But then the headaches started. Initially the scans were deceptive, they looked alright. But one dreadful holiday, May 2013, brought “migraine” after “migraine” and a creeping loss of visual fold. I got home and tried to run through the next Sunday sermon – and I could not read more than a few lines.

Round Two… Surgery
The next scan revealed that, as the oncologist sensitively put it, the tumour had “changed”; a malignant white mess where once it was calm grey had bided it’s time. Probably grade 3, maybe 4; chemotherapy was offered, which might keep things stable for a month, or a year, or just maybe more. One chink of light – a phone call from Addenbrookes. The tumour had grown in such a way that surgery was now a viable option. A debulking would make some base and make me more comfortable – perhaps extend life – but at the price of up to 40% of vision and the risk of making the whole thing worse. “I won’t even touch that bit at the back” said the surgeon. After a week of agonising we decided – what is there to lose.

Six weeks later – 27th July 2013 – I woke in the delivery room and opened my eyes. The first thing I noticed is that I could see, if anything, better than when I went over. The surgeon hurried past – “It went marvellously. Marvellously.” Two days later I was home at my mother’s house for recovery.  It was a pretty grim experience but we did it. Thanks mum.
We sensed it had gone well but the surgeons report was better than we ever imagined. The debulking exercise became “macroscopically complete resection.” And the icing on the cake was that the cancer cell DNA indicated a good response to PCV chemotherapy.

Round 3… Chemotherapy
By spring 2014 I had three rounds of six; my bone marrow was objecting and I was worried it would stop – but the scan showed no more was needed. No nasty white cells; just a halo of paler grey (the old grade 2, the oncologist suppose).

By spring 2015 it was even better. No grey mass visible at all, let alone white – just a hole. “Looks like a brain that had a tumour” sad a happy oncologist. I don’t suppose he gets to see that very often! This is has lead the doctors to re-examine the evidence from last year and conclude that the grey matter was scar material from the operation, not cancer cells at all. (Otherwise, how else would one explain how they have healed…?) The only remaining symptoms: reading is still a bit slow; a subtle impairment to my vision, and occasional headaches, no worse than those I have had all my life.

So where does the diet fit in?
Whatever it has been going on I am clearly extremely fortunate. The fact is, at a time when I would have expected to be in the last stages, I am alive, well and very functional with scans about as good as they get. I have done nothing to deserve this, any more than other do anything to deserve their suffering. But it is worth asking whether anything else – other than luck and good medical decisions and treatment – have helped this situation.

Some of you will be aware that I have been following the ketogenic diet (low carbs, high fat diet) since very soon after the diagnosis in 2013 – about a month before the operation. This diet is already used clinically to manage child epilepsy. The theory is that cancer cells, which only metabolise glucose, will be stress out by a low-carbohydrate diet, while health cells feast happily on ketones from fat. It’s not that simple of course – your body betrays you and produces your own glucose – and it is pretty hard to keep. I have never managed it perfectly and you are advised to have professional supervision to attempt is (in my case, delivered remotely by Sue Wood of Matthew’s Friends, funded by Astro Brain Tumour Fund).

To find out more you need to go their website. But for what it’s worth my subjective assessment would be:

Alongside the diet I have used a number of other supplements. I still take circumin (turmeric), vitamin C and D, and munch my way through a lot of apricot seeds. And, being a Christian minister, you will not be surprised to hear that I attribute all the benefits I have received ultimately to God. I have benefited from the prayers and support of hundreds, if not thousands, of people. The spiritual and community dimension of these struggles is important.

Keeping the diet has not been easy, especially for the first year; I have always been fairly rigorous but never to the point of daily weighing meal intake, and now I am on top of it I don’t measure blood levels like I did. In retrospect I would not have attempted to maintain the diet while in hospital for the surgery.  I have missed the forbidden fruits, but not as much as I had expected; and on those occasions when I lapse (like Christmas) I have enjoyed them, but not as much as I had expected! The main burden has been on Suzanne, having to prepare multiple meals.

The main difficulty comes with social occasions and works events - usually loaded with cakes – and days when I am working out and about and need to grab a quick lunch are difficult – thank goodness for Pret a Manger salad and M&S prawn cocktails. On balance, though, I would say that it has been worthwhile and just may have made a very significant difference.

I am very grateful to Astro Brain Tumour Fund for supporting me and Matthew’s Friends for delivering the back up for it, and hope that a body of evidence such as this can build up sufficiently for the medical establishment to consider it seriously.”

Tom Chapman, Norwich, July 2015

Invitation to brain tumour patients to participate in a research project instigated by Francesca Smithson Evans of University of Hull

Illness Perceptions and Quality of Life in Brain Tumours:
Does Diagnostic Communication have an Impact?
Participants Needed!

This research is looking at illness perceptions. These are a set of beliefs that people develop to make sense of their symptoms and condition. Research has suggested that people’s perceptions of their illness vary, even between those with similar illnesses. People can build their illness perceptions based in part on previous personal or family experiences with their illness, or information they may have received from medical staff or the general media. Numerous previous studies have demonstrated a link between illness perceptions and their quality of life. Quality of life is one way of looking at people’s wellbeing, and how they experience living with a medical condition.

This research is interested in whether people’s illness perceptions are affected by how the diagnosis of a brain tumour is communicated to them, and in turn whether their illness perceptions effect their quality of life.

Who can take part?
You are eligible to take part if you:
1. Have been diagnosed with a primary brain tumour,
2. Are aged 18  years or over,
3. Can read and write/type in English.

What is involved if I volunteer?
Volunteers will be asked to read a page of information about the research, informing them about the benefits and potential risks of taking part. Volunteers who decide to take part after reading this will complete an online questionnaire, as well as a short demographic questionnaire.  This could take 20-30 minutes. Volunteers are free to read the study information and complete the questionnaire at a time and place that is convenient for them.

How do I volunteer?
You can read the information and complete the questionnaires online via:

Please note, this questionnaire will close in December 2015

Matthew's FriendsFor more information please contact Francesca Smithson Evans, Researcher and Trainee Clinical Psychologist, at You can also contact  Dr Emma Wolverson at or Dr Catherine Derbyshire at  (Research Supervisors and Clinical Psychologists).

Thank you for your interest!

BNOS Annual Conference 2015

1st July 2015

“I returned today from helping Matthew’s Friends set up our joint stand at the British Neuro-oncology Society (BNOS) annual conference. The stand stood out with its pop-up banners, literature and posters making a colourful & informative display.

It was good to meet up with friends we at ABTF have made throughout our 14 years in the fundraising business – they included Kathy Oliver of the IBTA and several researchers we have funded over the years – all praised our efforts and their thanks were effusive. They said that small charities like ours had pushed research and support forward with our determination, enthusiasm, dedication and fundraising skills.

The Matthew’s Friends team of Sue, Val & Catherine were looking forward to their three days in Nottingham at the West Midlands Conference Centre at Nottingham University and were already answering questions before the official opening! The Ketogenic Diet is certainly being investigated and discussed by an increasing number of neuro-oncology personnel.”
Christine Forecast, Secretary, Astro Brain Tumour fund

Matthew's FriendsHouse of Commons Meeting

Trustees of Astro Brain Tumour Fund, Linda Rickford and Martin Segal, attended a meeting at the House of Commons on 17th March 2015 for the launch of Brain Tumour Research's 'Invest in a Cure' Manifesto.  They were joined by many patients and carers from around the country, scientists and other member charities to present the manifesto to MPs at Parliament. 

The Invest in a Cure Manifesto is an open invitation, and a call to action for MPs, inviting the UK Government to work with Brain Tumour Research and its partner organisations to shine the spotlight on research funding, incentivise and prioritise treatment for brain tumour patients, and to facilitate innovation by providing a dedicated fund for brain tumour research. John Bercow, Speaker for the House of Commons pledged his support, and Sheila Hancock CBE, whose grandson has a brain tumour, spoke passionately of the need for more research.
Read the manifesto

Ketogenic Diet

Read the latest report from Matthew's Friends regarding our involvement with them in connection with the Ketogenic Diet.

Thank you to the Astro Brain Tumour Fund and all its supporters! Why the link between low grade brain tumours and ketogenic therapy?

Ketogenic diet therapy (KD) is based on an individually prescribed low carbohydrate, high fat, adequate protein diet. It was created in the 1920’s and is still used in present day paediatric neurology practice, for children whose epilepsy has have failed to respond to the best that modern medicine can offer. The outcome can be remarkable! Our clinical experience in the UK has shown us that the KD also works just as well in adults but sadly the ketogenic therapy option is rarely offered, with NHS services limited to one London hospital for the whole of the UK. Hence the work of Matthew’s Friends Charity, offering a clinical service to adults and support to adult neurology teams wishing to offer this option to their patients.

It is not just better seizure control, adults readily report, but an improvement in associated symptoms such as fatigue, alertness and overall wellbeing. With these tangible benefits and the emerging research interest in the link between ketogenic therapy and cancer metabolism, it is not surprising that some adults with a low grade brain tumour and life impairing symptoms on a day to day basis wish to trial this option for themselves. Hence, the collaboration between Matthews Friends and The Astro Brain Tumour Fund.

You enable us to provide support and guidance to adults with low grade tumours who wish to explore the ketogenic therapy option to help manage seizures or associated life impairing symptoms such as fatigue. We are currently supporting fifteen adults who have been diagnosed with low grade brain tumours (age 19-49yrs), alongside their NHS clinical teams. Eight have astrocytomas, four have oligdendrogliomas and there are single cases of medullablastoma, pilocytic astrocytoma and glomus jugulare. Eight are choosing KD due to seizures and associated symptoms while six are adding it to their standard treatment protocol due to tumour progression. We also support a further four adults (age 26-66) with glioblastoma multiforme.

The number of enquiries we have received has increased significantly with new potential patients contacting us on almost a weekly basis. Matthew’s Friends are also supporting a number of patient’s high grade tumours to compliment the clinic that is supported by the Astro Fund.

We are working alongside the Charing Cross Hospital (London) neuro-oncology team to support the development of a clinical trial looking at the use of ketogenic therapy alongside standard care. Our current work is providing a valuable grounding for this.

We are now receiving enquiries from Oncology Dietitians from other centres expressing an interest in this area and we are currently developing training packages for such individuals so that we can ensure that we spread the knowledge so that further patients can be treated. We are looking at obtaining further grants to facilitate training days and patient support days in the Brain Tumour area and will of course keep you informed of our developments. As our partners in this area we will of course invite you to attend such training days and be involved alongside us.

During the summer we are employing the services of a post graduate bio-medical student and an undergraduate medical student to work with our clinical team in preparing all the case studies from our patients with a view to publishing our findings at the end of this year. This may also help with increasing awareness and increasing the interest from other oncology teams.
Last and by no means least, we are delighted to announce that as from Easter 2015 we have employed the services of Catherine Zabilowicz, a registered nutritionist who currently works at a Maggie Centre at Charing Cross. She is being employed by us to assist Sue Wood with the support of our patients and also help develop education materials specifically for Brain Tumour patients. With Catherine joining us, we will be able to facilitate more patients than we had originally hoped to be able to.

We would like to thank you most sincerely for your ongoing support with this work. We are delighted to be partnered with the Astro Brain Tumour Fund because without your funding support and your introduction to key clinical and research teams in the UK we would struggle to move ketogenic therapy forward for patients wishing to explore this novel option.

Very best wishes to all at Astro as well as all your wonderful supporters.

Emma Williams MBE
Clinic Director – Matthew’s Friends Clinics.
CEO/Founder – Matthew’s Friends Charity
Contact Matthew’s Friends on 01342 836 571 email

View a video made by Andy Wild. Andy, a brain tumour patient, is following the Ketogenic Diet.

Save lives - be a brain tumour tissue donor

Brain tumour tissue is removed everyday by surgeons but very few patients know they can donate brain tumour tissue to research.  A new campaign launched today [Tuesday 24 February] at the University of Bristol led by leading medical researchers and charity, brainstrust seeks to raise awareness for patients and healthcare professionals about donating brain tumour tissue and helping researchers find a cure for this disease.

A recent national survey indicated that only 30 per cent of brain tumour patients are offered the opportunity to consent for their brain tumour tissue to be used in research.  Yet a recent poll by brainstrust suggested that over 90 per cent of patients would be keen for their tissue to be used.

Sixty-thousand people in the UK are living with a brain tumour, 4,750 individuals are diagnosed with brain cancer every year and a further 4,500 are diagnosed with non-invasive tumours of the central nervous system. 

However, many people are unaware that researchers do not have enough tissue to carry out their research and this is slowing down their work.  By patients giving their consent, medical researchers will be able to use the donated brain tumour tissue for research into better treatments and to help find a cure for brain cancer.

The new campaign will close the gap by addressing the following issues:

Go to for further details.

Autumn Newsletter

Please click here to view our latest newsletter which is packed with exciting information including latest reports on research and fundraising activities.

Interview with Katie Sheen, founder of Astro Brain Tumour Fund

Hear the personal story of what inspired Katie Sheen to found Astro Brain Tumour Fund and later Soul Nutrition on this podcast for Croydon Radio, recorded from the Liverpool Conference.

Message from Matthew's Friends:

Thank you to the Astro Brain Tumour Fund and all its supporters!

Matthew's FriendsYou enable us to provide support and guidance to adults with low grade tumours who wish to explore the ketogenic option to help manage seizures or associated life impairing symptoms such as fatigue. We are currently supporting nine adults who have been diagnosed with low grade brain tumours (age 28-49yrs), alongside their NHS clinical teams. Six have astrocytomas, two have oligdendrogliomas and one has a medullablastoma. Five are choosing KD due to seizures and associated symptoms while four are adding it to their standard treatment protocol due to tumour progression. We also support a further three adults (age 40-69) with glioblastoma multiforme.

KD is not suited to all, for medical, social or lifestyle reasons; the dietary changes, with rigorous monitoring (when there are seizures) can be very challenging and time consuming, especially in the initial few months. However, for some, it is the only treatment that has the potential to deliver an improvement in day to day life so on balance, the ‘pros’ outweigh the ‘cons’.

Interest in KD as an adjunctive treatment is increasing as neuro-oncology clinicians continue to be frustrated by the limitations of the current therapy on offer. A UK clinical trial is urgently needed and our current work is providing a valuable grounding for this. Without the your funding support and your introduction to key clinical and research teams in the UK (thank you Katie!) we would struggle to move ketogenic therapy forward for patients wishing to explore this novel option.

Why the link between low grade brain tumours and ketogenic therapy?

Ketogenic diet therapy (KD) is based on an individually prescribed low carbohydrate, high fat, adequate protein diet. It was created in the 1920’s and is still used in present day paediatric neurology practice, for children whose epilepsy has have failed to respond to the best that modern medicine can offer. The outcome can be remarkable! Our clinical experience in the UK has shown us that the KD also works just as well in adults but sadly the ketogenic therapy option is rarely offered, with NHS services limited to one London hospital for the whole of the UK. Hence the work of Matthew’s Friends Charity, offering a clinical service to adults and support to adult neurology teams wishing to offer this option to their patients.

It is not just better seizure control, adults readily report, but an improvement in associated symptoms such as fatigue, alertness and overall wellbeing. With these tangible benefits and the emerging research interest in the link between ketogenic therapy and cancer metabolism, it is not surprising that some adults with a low grade brain tumour and life impairing symptoms on a day to day basis wish to trial this option for themselves. Hence, the collaboration between Matthew’s Friends and The Astro Brain Tumour Fund.

Low Grade Glioma Support

We have set up a new facebook page, administered by Astro Brain Tumour Fund Trusteee, Linda Rickford, specifically for LGG patients, their
friends and family.  This is a closed group - you need to apply to join. This will be a convenient, easy and confidential place to share your
thoughts, feelings and experiences with others who understand.

Go to the Astro Brain Tumour Fund Low Grade Glioma Support Facebook Group and click on the "join group" icon.  It would be appreciated if you could also send Linda a private message with brief details of who has the tumour, tumour type and grade.

Launch of Collaborative Partnership between Brain Tumour Reasearch and three new Centres of Excellence

Patients, Carers, scientists, clinicians and charities from across the UK met at Westminster on 4th March for the launch of collaborative partnerships between the Brain Tumour Research Charity, (of which Astro Brain Tumour Fund is a member) and 3 new Research Centres of Excellence. This announcement opens a new chapter into research into the biggest cancer killer of children and young adults. Sue Farrington-Smith, Chief executive of BTR, said "The Centres will form a new and powerful network, collaborating with each other and other institutes, both within the UK and internationally, in order to accelerate progress in brain tumour research and make a clinical difference."

Astro Brain Tumour Fund at Parliament

Astro Brain Tumour Fund Trustee, Linda Rickford, represented the charity at the event, and was accompanied by members of the charity Matthew’s Friends( Sue Wood, dietician and Emma Williams MBE, founder), with whom ABTF are collaborating on research investigating the potential use of the Ketogenic Diet on brain tumours, and by brain tumour patient Zoe Taylor and her husband Lee.

Astro Brain Tumour Fund at Parliament

It is great news that one of the new centres is  Plymouth University Peninsula School of Medicine and Dentistry.  Professor Oliver Hanemann leads the Peninsula Team there and has a world leading track record in low grade brain tumours occurring in teenagers and adults. By identifying and understanding the mechanism that makes a cell become cancerous, the team explores ways in which to halt or reverse that mechanism.  Astro Brain Tumour Fund  has been funding laboratory consumables supporting Prof Hanemann’s research for the last few years.

This gives new hope to the 16,000 people diagnosed with brain tumours each year.  It is great news for us all, but highlights the need to keep fundraising! 

Ketogenic Diet

Astro Brain Tumour Fund is excited to be collaborating with Matthew's Friends on research investigating the potential use of the ketogenic diet for brain tumour patients.
Ketogenic Dietary Therapy
Video of the Matthew's Friends European Dietitians Ketogenic Dietary Therapies Meeting 2013

Interactive support website to make donations to Astro Brain Tumour Fund

Soul Nutrition is a new interactive online support resource inspired by a combination of inspiraton from positive psychology, mindfulness and the links between nourishment and well-being. When faced with a difficult diagnosis it is all too easy to become overwhelmed with concerns about the future, so Soul Nutrition offers three tools to help people stay in the moment and hence cope more easily with whatever life throws in their path. 

The Happiness Calendar is used to record three moments of happiness each day, helping to maintain a positive outlook and build up a virtual cloud of happy memories. Nourish is a food diary in which you can reflect upon changes in your well-being as you choose more supportive foods. SHIFT is a unique life coaching model which anchors you in the present moment, encouraging you to play to your strengths and shift the balance in life so that you experience happiness more often.

In the midst of modern life in which we are bombarded by messages about what could or should make us happy, Soul Nutrition gives you space to think, to reconnect with the inner voice that has your best interests at heart, and to explore how best to act on the insights that are gained.

The website offers a 30 day free trial, and then you can choose to subscribe for 6 months at £9.99 or 12 months at £18.99.  A minimum of 10% net profits will be donated to the brain tumour charity Astro Brain Tumour Fund.

Twitter: @soulnutrition1

Headsmart Campaign - Be Brain Tumour Aware

Each week in the UK, around ten children or teenagers are diagnosed with a brain tumour.  From the appearance of their first symptoms, half of these children will be diagnosed within 12-13 weeks (median).  For the other half diagnosis takes longer, sometimes up to a year or two.  In comparison, similar figures in other countries show that half the cases are diagnosed in as little as 5 weeks. 

The aim of the HeadSmart campaign is to reduce the time it takes to diagnose children and young people with brain tumours in the UK by educating healthcare professionals and the public about the symptoms of brain tumours in this age group.  Reducing the time to diagnosis should reduce the long term disability that many children and young people diagnosed with a brain tumour currently experience.

Go to for further information or download a copy of the HeadSmart awareness card.

Travel insurance advice

We now have a new section offering advice on getting travel insurance if you have a low-grade brain tumour. See the Live your Dreams page or click here.

Brain Tumour Consortium website launched

We are delighted to announce the launch of the Brain Tumour Consortium website. The Brain Tumour Consortium is a coalition of UK brain tumour charities and trusts, including Astro Brain Tumour Fund as a member of the Brain Tumour Research group of charities.

Our aim is to work together to campaign for improved brain tumour policy and services in the areas of support, care and treatment; patient involvement and choice; and research. The three priorities identified from our Manifesto are to ensure that the Government prioritises the following:

  1. Ensure early diagnosis and treatment
  2. Implement NICE's best practice guidance
  3. Increase Government investment in brain tumour research, and more accurately measure numbers of both primary and secondary brain tumours

Visit the Brain Tumour Consortium website and please contact us if you would like to become actively involved in our political lobbying.

Astro Fund contributes to new Clinical Guidelines for rare brain tumours

Following a recommendation in the Improving Outcomes for People with Brain and other CNS Tumours (June 2006), the British Neuro-oncology Society (BNOS) worked with the National Cancer Action Team to produce four new national clinical guidelines for rare adult brain and CNS tumours (Adult PNET, Primary CNS Lymphoma, Pineal and Optic Pathway Glioma).  Astro Brain Tumour Fund's Founder, Katie Sheen, was honoured to be part of the team invited to contribute to their development, and you can now access the published documents at

Raise Awareness & Funding for those affected by Brain Tumours: e-petition to Department of Health

The government must take action, NOW, to IMPROVE AWARENESS AND FUNDING IN THE UK:


Sign the online petition