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Research

There are many reasons to hope for a breakthrough in low-grade brain tumour research within the near future. There were no LGG research projects underway in the UK when Astro Brain Tumour Fund was founded in 2001, yet we have been able to fund six laboratory based projects since then, and are still working hard to raise the funds to get more underway.

We have also been greatly encouraged by the increasing number of low-grade glioma research projects successfully completed each year at neuro-oncology research centres around the globe.

"As the mother of a brain tumour patient, I often remind myself that when our day ends and we go to sleep on this side of the world, a new day breaks on the other side of the globe, where people are just waking up to a new day in their laboratories, a new day in their surgeries and a new day in their wards and clinics. Likewise, when those on the other side of the world finish their day, we on this side are just beginning ours.

Who knows what new brain tumour treatments might be discovered when daylight breaks in various corners of the world?

So even while we sleep there is hope."

Kathy Oliver, Co-Director of the International Brain Tumour Alliance

If you are looking for previously published research papers on a particular topic, the comprehensive worldwide database is PubMed. In order to access the full text of most of the papers you have to subscribe to the relevant journal in which they were published. However all University Libraries and main City Libraries have subscriptions to those main journals, which enables you to browse the full articles online and then pay the library to print off copies. Many University libraries have an arrangement whereby you can use their facilities, so you may like to speak to your local one to find out what systems they have in place.

One of the easiest ways to view just brain tumour research papers online is to surf BrainLife. Research papers are reviewed before being published in a categorised format, and you can sign up to their regular newsletter to make sure that you never miss a new discovery.

Other websites which publish regular updates about latest research are the UK based BT Buddies and the American website Clinical Trials and Noteworthy Treatments for Brain Tumors. For regular updates about their Ependymoma research, visit the website of the American based CERN Foundation (Collaborative Ependymoma Research Network).

Please note that all research papers tend to refer to statistics related to prognosis and survival, so please do not download these if you would prefer not to read this type of information.

Matthew’s Friends and the Ketogenic Diet

Here is a report from Matthew's Friends detailing the progress they have made so far by supporting brain tumour patients with the ketogenic diet.  Astro Brain Tumour Fund continues to fund this work. 

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

Ketogenic therapy continues to gain momentum in all areas of oncology but it is brain tumours where we have the most significant amount of research.  It is the cases of low grade tumours, suffering from seizures and fatigue where we still believe the most immediate benefit can be achieved from the diet. We are therefore extremely grateful for the ongoing support from The Astro Brain Tumour Fund which enables us to work with this group of patients and help them gain improved seizure control, reduce levels of fatigue and possibly have an impact on curbing tumour progression. At present we are actively supporting twenty-two adults and two paediatric cases with brain tumours, alongside their NHS clinical teams. We have had particular success with a paediatric case and hope this may lead on to research within this field. Twenty-three new patients have been trained since January 2016. Twelve patients have low grade tumours and twelve high grade tumours, predominately glioblastoma multiforme.    Our oncology team consists of dietitian Sue Wood and her assistant nutritional therapist Catherine Zabilowicz. In order to understand the impact of KD on metabolic changes in the gliomas themselves, much work is still to be done. We are slowly moving forward in our work alongside the Charing Cross Hospital (London) neuro-oncology team in the development of a clinical trial looking at the use of ketogenic therapy alongside standard care. A neuro-oncology trial co-ordinator and a research nurse have recently been appointed at Imperial HealthTrust to help move the trial forward and get it off the ground. After much consideration it has been decided that there will be a control arm to the trial but the finer details are yet to be confirmed. In the meantime our case study report co-authored by Sue Wood, Catherine Zabilowicz and Dr. Matthew Williams (neuro-oncologist at Imperial Health Trust) is ready for publication. We are seeking opportunities to publish in a dietetic or brain tumour journal. We are also looking to hone this paper to the fourteen cases where we received adequate ongoing quality of life information. This will capture the information set out in our recent academic poster (see attached) and will be a more concise analysis of
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 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 four centres 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. 
our results, which we feel will increase the likelihood of securing publication in a peer reviewed oncology journal. 

Our poster was presented at BNOS where Dr. Matt Williams also made a presentation.  Dr. Williams has provided information on ketogenic therapies and Brain Tumour at several meetings for us this year so the educational work continues to increase in this area.  

June 2017 saw the launch of our second ‘Keto College’, offering training days for those involved in supporting patients with epilepsy, brain tumours and other metabolic disorders. This year’s event was run over three days and we were delighted to welcome speakers from Europe and the USA and attendees from across the world. 

In October I have been invited to attend the International Brain Tumour Alliance Summit to talk further about our work and collaboration.  

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

Ketongenic Therapy Poster

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.

The programme is now fully funded with £45,000 from Astro Brain Tumour Fund, £10,000 from Jessica Hope Foundation and £45,000 from Brain Tumour Action.

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 www.makewilliamwell.com 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.

Astro Brain Tumour Fund: Grant Funding to provide Dietetics support for patients wishing to explore the potential use of ketogenic dietary therapy alongside conventional treatment for low-grade gliomas

Matthews FriendsThe Matthew’s Friends organisation specialises in using medically supervised Ketogenic Diets for neurological conditions such as Epilepsy and Glut 1 Deficiency.  Since 2011 they have supported the ketogenic treatment of some individual cases of brain cancer, as an adjunct to their standard medical care, alongside the patient’s local oncology team. This has been of particular relevance where the individual is living with drug resistant epilepsy as a result of their brain tumour.

Matthews Friends ClinicsAstro Brain Tumour Fund are now working closely alongside Matthew’s Friends and providing funding support for selected case studies through the Matthew’s Friends clinical treatment programme.  Data from these individual cases will be used to build the evidence base for the potential use of the ketogenic diet as an adjunct therapy for brain tumours, as a first step towards the design and funding of high quality research projects and clinical trials into this area.

Please note that Matthew’s Friends and Astro Brain Tumour Fund always advocate standard of care as a first line treatment for brain cancer, with ketogenic diet therapy as a possible adjunctive therapy in appropriate cases. They cannot support patients who choose to refuse treatment against the advice of their medical team.
To find out more, please click here

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.

See the report from brain tumour patient Tom Chapman, who has been following the ketogenic diet since June 2013.

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 e.williams@mfclinics.com

Astro Brain Tumour Fund: Grant Funding to find new treatments for schwannomas, meningiomas and ependyomas

Oliver HanemannProf C. Oliver Hanemann, MD, FRCP and his team at Peninsula College of Medicine & Dentistry, Plymouth, are carrying out vital research to find a new therapeutic approach for low grade brain tumours, including schwannomas, meningiomas and ependymomas. Taking advantage of their direct access to human material from the surgical removal of tumours, they have developed a unique model of primary human cell culture, and successfully used it to identify new drug treatments. They have also discovered a key mechanism that accounts for many of the changes in signalling pathways and growth factors occurring in tumour cells.

Prof Hanemann and his team urgently needed funding for laboratory consumables to enable them to continue this exciting research and Astro Brain Tumour Fund are delighted to announce that we have agreed to  fund the purchase of these over the next two years.
Full details of the project

Astro Brain Tumour Fund: Grant Funding to research genetic abnormalities in low grade astrocytomas

Astro Brain Tumour Fund are delighted to announce that, in conjunction with Brain Tumour Action, we are providing grant funding for 2013 to the team led by Professor Denise Sheer, Professor of Human Genetics, Centre of Neuroscience and Trauma, at the Blizard Institute, London. Professor Sheer and her team are researching genetic abnormalities into pilocytic and other low grade astrocytomas. This work is crucial to advance our understanding and provide treatment for these common brain tumours, a disease which incapacitates and kills more children than any other cancer.

Professor Sheer's team has been responsible for several major breakthroughs in the past three years including the identification of specific gene fusions in virtually every case of pilocytic astrocytoma. This discovery has opened avenues for new types of treatment for low grade astrocytomas (see http://clinicaltrials.gov/ct2/show/NCT01089101). They were awarded the Jeremy Jass Prize for Excellence in Pathology for this work.

Last year, however, she faced the prospect of her lead researcher, Dr Jenni Jayapalan, being made redundant due to continuing grant cut-backs. The team had completed two new sets of experiments on a large collection of children's low grade astrocytomas, continuing in their long-standing collaboration with St Jude Children's Research Hospital in Memphis and urgently needed to keep Dr Jeyapalan on so that she could analyse the data from these experiments and determine their significance for low grade astrocytomas in children.

Visit to the Blizard InstituteWe are delighted to announce that we are supporting the funding of Dr Jenni Jayapalan once again at the Blizard Institute in 2013.  Trustees and supporters of Astro Fund gathered at the Blizard Insitute, London on 14th March 2013, for an informative talk by Prof Denise Sheer and her team who updated us on the latest exciting developments of the research that they are carrying out on low-grade brain tumours.

Latest Update
25th October 2012

“We are obtaining very exciting results that are giving us crucial information on the origins and behaviour of children’s low grade astrocytomas. We have given presentations at several recent conferences and meetings, where our findings were very well received:

Astro Brain Tumour Fund: supporting strategic advances in UK brain tumour research

Carol WalkerFrom 2010 to 2012 Astro Brain Tumour Fund worked closely with Brain Tumour North West (BTNW) through the joint appointment of Dr Carol Walker into the new role of Brain Tumour Research Co-Ordinator for BTNW.

Carol is based at The Walton Centre and Clatterbridge Centre for Oncology, both in the Liverpool area. She has extensive experience within the brain tumour research community and is a council member of the British Neuro-Oncology Society.

Her work has focused on increasing the amount of collaborative translational clinical research between BTNW members and with other UK research centres, providing a framework for larger scale studies than had previously been possible, and allowing an increased number of significant research projects into LGGs to begin. During this period she successfully applied for a number of grants, and was instrumental in the foundation of the Walton Centre Brain Tissue Bank: a crucial step to provide the building blocks for further research.

BTNW is a strategic alliance between the Universities of Central Lancashire, Wolverhampton, Manchester Metropolitan, Liverpool and Keele. Together with the Lancashire Teaching Hospitals, Clatterbridge Centre for Oncology and Walton Centre NHS Trusts, BTNW brings academic staff, consultant neurosurgeons, neuropathologists and oncologists together with specialist nurses, biomedical scientists and other allied healthcare professionals.

Ultimately, their collaborative work will result in improved and faster methods of accurate diagnosis, with effective treatment customised to the individual patient.  Astro Brain Tumour Fund are proud to have helped them on their way to achieving their goals.

See Carol's progress report from 2011
More information and progress at the Walton Centre

Astro Brain Tumour Fund has either completely or majority funded each of the following low-grade glioma research projects:

Translocator Protein Expression and Microglial Activation in Glioma:
A PK11195 PET Study

Wolfson teamPrincipal Investigator: Professor Karl Herholz, Professor of Clinical Neuroscience. Director of the Wolfson Molecular Imaging Centre (WMIC), The University of Manchester. Honorary Neurological Consultant at Hope Hospital, Salford Royal NHS Foundation Trust.
A collaborative project between: The Wolfson Molecular Imaging Centre (WMIC), The University of Manchester Hope Hospital, Salford Royal NHS Foundation Trust and Imperial College, London (Charing Cross Hospital and Hammersmith Hospital)
Click here for a detailed summary of this project
Click here for Poster Presentation of the research undertaken to Spring 2010, accepted for the British Neuro-Oncology Society Annual Conference, 23rd June-25th June 2010

Molecular genetic and epigenetic analysis of paediatric Low-Grade Gliomas.

Principal Investigator: Professor Denise Sheer, Professor of Human Genetics, Institute of Cell and Molecular Science, Queen Mary, University of London
Click here for a detailed summary of this project

Investigation of the functions of Vascular Endothelial Growth Factor-A and Interleukin-10 in low and high-grade brain tumours, and the potential of these factors as prognostic markers.

Principal Investigators: Dr John Greenman, Reader in Tumour Immunology, Postgraduate Medical Institute, University of Hull and Mr David O'Brien, Consultant Neurosurgeon and Honorary Senior Lecturer, Hull Royal Infirmary.
Click here for a detailed summary of this project

Radiological and Molecular markers of subsequent behaviour in adult low-grade glioma

Principal Investigator: Dr Tracey Warr, Lecturer in Molecular Tumour Genetics, Department of Molecular Neuroscience, Institute of Neurology, National Hospital for Neurology & Neurosurgery, Queen Square, London.
Click here for a detailed summary of this project

Advanced Magnetic Resonance Imaging and Metabolic Studies of Low-Grade Gliomas of Childhood.

A collaborative project between:
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, Surrey.
Principal Investigator: Prof Richard Grundy, Professor of Paediatric Neuro-Oncology and Cancer Biology, Honorary Consultant in Paediatric Oncology, University of Nottingham.
Click here for a detailed summary of this project

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 http://www.brainstrust.org.uk/tissue-donation.php for further details.