Each of the members was galvanised into action as a result of personal involvement with brain tumours, having realised that there is relatively little being done to support brain tumour patients or carers, or towards funding research into finding a cure, compared to other more high-profile cancers.
Today, Brain Tumour Research still supports and is supported by numerous official Member Charities from across the UK that are united with us under our national banner. We embrace these collaborations and welcome any and all new Member Charities.
Our collective voice carries greater weight in media coverage and adds weight to our political campaigning action. Our Member Charities are helping us build a game-changing network of world-class Research Centres of Excellence in the UK.
To find out more about joining our family of Member Charities, email anju.chadha-mclean@braintumourresearch.org
Ali’s Dream
Set up in 2001 following the death of Alison Phelan from a brain tumour 3 weeks before her eighth birthday, Ali’s Dream raises funds for research into childhood brain tumours.
Sue Farrington Smith – 01296 730230 Email: sue@alisdream.org.uk
Read Alison's story.
Anna's Hope
Assist in the rehabilitation of children and young people who have suffered from a brain tumour or who have had brain surgery and support the funding of research into the causes, treatment and cure of childhood brain tumours.
Robert and Carole Hughes - 01780 740492 Email: admin@annashope.co.uk
Read Anna's story.
Annie's Challenge
www.annieschallenge.org
This family-run, Suffolk-based charity was set up after Annie Hughes, a fit and healthy woman and a loving mother of two young children, was diagnosed with a high-grade brain tumour. Because of its position on the brainstem, Annie and her family were told there was no treatment available,other than palliative radiotherapy. Just eight months later, Annie passed away, aged just 29.
Annie’s Challenge funds research into all forms of brain tumour, as well as helping charities dedicated to ongoing care for those affected by brain tumours. Currently the charity is part-funding a PhD researcher at Brain Tumour Research’s Centre of Excellence at Queen Mary University of London over a three-year period.
Read Annie’s story.
Astro Brain Tumour Fund
Astro Brain Tumour Fund raises funds to support research into low-grade glioma (LGG) brain tumours. The charity also offers information and support via its informative website and closed Facebook page (Astro Brain Tumour Fund Low Grade Glioma Support) which has over 350 worldwide members.
Contact:
Mary for information, fundraising and donations - treasurer@astrofund.org.uk
Linda for information and support - lindatrustee@astrofund.org.uk
Blue Skye Thinking
The charity was set up by the family of Skye Hall who was diagnosed with a grade 4 medulloblastoma in 2013. Despite surgery, and a tough treatment regime of chemotherapy and radiotherapy known as the Milan Protocol (now withdrawn from use in the UK because of its toxic side-effects), Skye passed away at home 12 months later from neuro-toxicity.
Blue Skye Thinking supports research into the treatment of childhood brain tumours, striving to give all children diagnosed a better chance of survival and improved quality of life during and post treatment. Run by volunteers, funds donated go directly to the forefront of research and wellbeing projects.
The family also actively campaigns for ‘real-time’ data collection for standard treatment protocols to stop preventable deaths.
Sally and Andrew Hall – 01242 262731 / 07795 485549. Email: contact@blueskyethinking.org
Brain & Spine Foundation
Brain & Spine Foundation is a UK wide charity providing support and information on the full range of neurological conditions to patients, carers and health professionals.
Helpline - 0808 808 1000 Office - 020 7793 5900 Email: info@brainandspine.org.uk
Brain Tumour Research Campaign
Raises public awareness and funds for research into brain tumours at Imperial College London’s Charing Cross and Hammersmith hospitals.
Wendy Fulcher - 020 8601 2402 Email: wendy@btrc-charity.org
Read John's story.
brainstrust
Explores brain tumour treatment worldwide and supports patients and their families at the point of diagnosis, brainstrust is dedicated to improving proactive care for brain tumour sufferers.
Helen Bulbeck - 01983 292405 Email: hello@brainstrust.org.uk
Read Meg's story.
Brainwaves NI
A Northern Ireland-based research and support group for brain tumour sufferers, children and adults, their families and their carers.
Michaela 028 8676 6000 Email: info@brainwaves-ni.org
Charlie's Challenge
https://charlieschallenge.co.uk/
Raises money to finance research into children’s brain tumours.Nigel Boutwood - 01825 872508 Email: charity@charlieschallenge.com
Read Charlie's story.
Children's Brain Tumour Research Centre
CBTRC brings together a multi-disciplinary team of leading healthcare professionals and researchers - all committed to improving our understanding of childhood brain tumours.
Emma Roberts - 0115 951 3724 Email: emma.pearson@nottingham.ac.uk
Finnbars Force
The charity was set up in 2017 by Finnbar Cork’s parents after they lost their son in August 2016. Finnbar passed away aged five, just five months after being diagnosed with a brain tumour and just over a month before his birthday.
Finnbar’s Force works to support families in East Anglia who have a child diagnosed with a brain tumour. It also raises funds for research into childhood brain cancer and seeks to raise awareness of the disease and its debilitating effects and to campaign for improvements in the current standard of care and support available, as well as for more research.
Tristan and Claire Cork - 07419 369770 Email: info@finnbarsforce.co.uk
Read Finnbar's story.
In Sue’s Name
In Sue’s Name was set up in honour and remembrance of a very special wife, mother and daughter, Sue Blasotta, who was diagnosed with lesions on the brain in November 2010 and died just six weeks later, aged 42.
The primary aims of the charity are to raise awareness of brain cancer, the leading cause of cancer-related deaths in the UK among children and adult patients under the age of 40; to support clinical research into brain cancers; and to offer a forum of support to brain cancer patients and their families. In Sue’s Name has set a target to raise £1 million by 2027 to provide crucial research funds to support Brain Tumour Research’s Centre of Excellence at Queen Mary University of London.
Read Sue's story.
inbetweenears
This is a charity for young adults with brain tumours / brain cancer and provides not only support, but a thriving and interactive social community.
James Clifford Campling Trust
jamescliffordcamplingtrust.co.uk
The charity, James Clifford Campling Trust, based in Grimsby, was set up by family and friends of James to continue his legacy. James was an aeromedical nurse in the Royal Air Force, who passed away from a glioblastoma multiforme (GBM) brain tumour in 2018, aged just 29. He had been diagnosed less than two years previously. James spent his life travelling the world and visited 82 countries, raising money for a variety of charities. In the 22 months since diagnosis, with the help of his friends, James raised £30,000 to support research into brain tumours and succeeded in ticking off all but 12 of 100 things on his bucket list.
James Clifford Campling Trust has three aims: it offers funding of up to £2,000 to people over the age of 18 with a life-changing condition to help them reach their life goals; it is setting up a retreat to support people with life-limiting illnesses and their families, and is funding research into GBMs.
Diane Campling – 07708 668136
Follow James Clifford Campling Trust on Facebook
Levi's Star Children's Brain Tumour Charity
Support children with brain tumours. It is also our wish to raise awareness about the symptoms of brain tumours, a truly devastating disease and support established research projects.
Vicky Ringer - 07971 932610 Email: levisstar@btinternet.com
Read Levi's story.
Matthew's Friends
Matthew’s Friends was set up by mum Emma Williams MBE in 2004 after her son Matthew had suffered from hundreds of seizures a week for seven years before taking part in a trial of the ketogenic diet. Within two weeks of starting the diet, Matthew’s seizures had reduced by 90% and within eight months he was off all medication.
The charity specialises exclusively in medical ketogenic dietary therapies to control seizures. It supports patients, families and professionals by providing information, training, research and grants to develop ketogenic services and support systems for drug resistant (refractory) epilepsy, as well as other neurological and metabolic disorders and emerging cancer types.
Emma Williams – 01342 836571 Email: emma@matthewsfriends.org
NF2 BioSolutions
https://nf2biosolutions.org/nf2-biosolutions-uk-europe/
This patient-led charity works to raise awareness and increase connections, hope and support for NF2-related shwannomatosis (NF2) patients and their families. Its goal is to fundraise for new treatments and ultimately a cure for NF2.
NF2 is a rare genetic disorder affecting approximately 1/35,000 children and adults globally. Patients are born with NF2, resulting in the growth of multiple tumours throughout the central (brain/spine) and peripheral (organ/limbs) nervous systems, including schwannomas, meningiomas and ependymomas.
CEO Clare Goddard - clare@nf2biosolutions.org
Shay’s Smiles
Shay’s Smiles was set up by the family of 13-year-old Shayen Patel (known to all as Shay), who passed away on 1st September 2020. Shay died less than two years after being diagnosed with a glioblastoma multiforme (GBM).
The charity’s mission is to support families of children diagnosed with GBM with the cost of genetic testing, specialist doctors and providing care, as well as funding vital research to help further the desperate need for a cure. It has committed to fund a PhD student over a four-year period at a cost of £143,657, working within the team at the Brain Tumour Research Centre of Excellence at Queen Mary University of London (QMUL), developing new treatment strategies to inhibit the progression of GBM brain tumours.
Nicola O’Dea-Patel – 07968 791221
Email: support@shayssmiles.org
The Danny Green Fund
The Danny Green Fund was set up when his parents lost their gorgeous son Danny at the age of 11. Before he was diagnosed with a brain tumour, their beautiful, fun loving and energetic son was a typical 10 year old in every way, very much living for the moment and enjoying life. Danny went from being a healthy, lively child to needing intensive and prolonged rehabilitation to enable him to even speak and walk again following surgery to remove the tumour. Tragically they still lost him leaving a void which will never be filled.
The Danny Green Fund helps children under the age of 16 suffering from the symptoms of Posterior Fossa Syndrome as the result of a brain tumour and also provides funding for the development of research into the prevention, treatment and cure of children’s brain tumours.
Read Danny's story.
The Jane Packer Foundation
Gary Wallis - 020 7935 0787 Email: office@thejanepackerfoundation.com
Read Jane's story.
The Jorja-Rose Foundation
The Jorja-Rose Foundation was set up in 2018 by mum Carla Dawson after she and her husband Lee lost their two-year-old daughter Jorja-Rose in October 2017 to a rare pineoblastoma brain tumour, 18 months after diagnosis.
The charity aims to raise awareness and is funding research into childhood brain tumours. It is also fundraising to help Queen’s Medical Centre in Nottingham purchase an intraoperative magnetic resonance imaging (iMRI) scanner to help guide neuro-surgeons locate abnormalities within the brain or distinguish abnormal brain tissue from normal brain tissue. Jorja-Rose’s parents believe that the presence of an iMRI scanner could have saved their daughter’s life. The foundation also supports families who have a child being treated on either of the paediatric neurology and oncology wards at Queen’s where Jorja-Rose was herself cared for.
Carla Dawson - 07525 410023 Email: thejorjarosefoundation@gmail.com
The Rudy A Menon Foundation
Inspired by Rudy who passed away in 2013 on his 26th birthday from gliomatosis cerebri (GC), The Rudy A Menon Foundation funds research at The Institute of Cancer Research (ICR) into GC and other rare and inoperable brain cancers affecting children and young adults.
The charity also provides support and information to families while raising awareness at a global level by engaging with research bodies.
Somnath Menon info@rudymenon.org
The William Low Trust
The Trust was launched by Helen and Craig on the second anniversary of losing their 17-year-old son, William, to a brain tumour. Will was originally diagnosed with a cancerous medulloblastoma at just five years of age. Helen, Craig, Harriet and the hard-working committee are supporting research into finding more effective treatments and ultimately a cure for brain tumours.
Will died on 11 August 2017. He and his family had endured the crushing revelation that his brain tumour had returned when he was 13. Will underwent further surgery, chemo and radiotherapy, as well as a stem cell transplant. Sadly, aged 16, tumours developed on his spine, and Will reached the end of the road in terms of treatment. Amazingly, despite everything, including having to learn to use his left hand after losing the use of his right, Will achieved good grades in all his GCSEs, not least an A* in Art, demonstrating his determination to get on with his life.
Helen Forbes-Low – info@thewilliamlowtrust.org.uk
Thorne Mason Trust
Help people in Pembrokeshire who are in any way affected by cancer and fund research into glioblastoma multiforme brain tumours.
Debbie Mason - 01437 766011 Email: thornemasontrust@googlemail.com
Read Mike's story.
Yorkshire’s Brain Tumour Charity
The charity was Yorkshire’s first ever brain tumour charity. It was originally called Andrea’s Gift, inspired by Andrea Key who was diagnosed with an aggressive brain tumour and told she had 12 months to live. Andrea died in May 2002 but left the brain tumour charity in Yorkshire as a gift to provide patients and their families a support network, and a commitment to local research, in the hope that a cure could be found.
Today, Yorkshire’s Brain Tumour Charity continues to offer support to patients and their loved ones through welfare peer support services (groups and walks in their local areas), welfare advice and financial assistance and 1-2-1 support and signposting. They also invest in local research in Yorkshire, with a particular emphasis on seed-funding new and innovative projects.
David Grant Roberts – phone no 0113 340 0111 or email info@yorksbtc.org.uk