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… the question every cancer parent asks 

Funding Vital Research and Family Support

We finance Research. It’s the only way we are going to beat rare brain tumours

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Financial grants are just one way we can help make life a little easier

Founding Trustee Dianne Parkes on ITV
talking about the partnership with The Brain Tumour Charity

Dianne Parkes

The Silence is Deafening

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Cancer affects 1 in 500 children every year in the U.K and whilst the majority of children will survive, children with rare brain tumours may not be so fortunate

Fifty Years ago, sadly 60% of children with a cancer diagnosis didn’t make it.  Now the prognosis for most children is looking much better with 80% of children recovering from most cancers. 

Sadly the same can’t be said for Children’s Brain Tumours

Along with funding research into rare childhood brain tumours, such as DIPG, Joss Searchlight raises awareness and provides support for families of children suffering from rare cancers of the brain.

Having a child diagnosed with cancer is one of the most frightening things that a family will experience. Approximately 1600 children (1:285) will be diagnosed with cancer before the age of 15 every year in the U.K.

Tumours can start in any part of the brain or spinal cord and there are over 130 different types of brain tumour. 

Brain and spinal tumours represent 26% of all of childhood cancers with Gliomas in the brain stem being very rare but the most difficult to treat. Brain stem gliomas in children are also called diffuse intrinsic pontine glioma (DIPG). The brain stem is the lowest part of the brain which connects with the spinal cord, controlling major bodily functions such as breathing.

From the moment a child is diagnosed with a rare form Cancer Joss Searchlight is there for the family. Whether it’s advice, counselling, specialist equipment, a break or simply pointing in the right direction, we are there.


Thankfully Childhood brain tumours are relatively rare

Childhood brain tumours are relatively rare.

Between 400 – 500 children and young people are diagnosed with a brain tumour each year in the UK.

Most of the time symptoms that your child may show that cause you concern will not be due to a brain tumour. However, if your child is showing one or more symptom, it is important to talk to your doctor if you are concerned.

What are the Symptoms of a Childhood brain tumour ?

Symptoms of brain tumours can vary from child to child.

Symptoms can often mimic relatively minor childhood illnesses.

Common symptoms of brain tumours

Taking Your Child to a G.P if you suspect a brain tumour

If your child has one or more of the symptoms listed, you should take them to see a Doctor as soon as possible.

Explain your concerns about the symptoms being a sign of a possible brain tumour.

If your child is exhibiting two or more of the symptoms listed, ask the Doctor for an urgent referral, meaning  your child will be given an appointment with a specialist who can look into the cause of the symptoms.

Alex’s daughter Anastasia was diagnosed with an incurable brain cancer (DIPG) and given perhaps 12 months to live.

Anastasia’s parents Alex and James chose to keep the family together by caring for Anastasia at home.Alex said that even as her daughter’s condition deteriorated she was struggling to afford to keep the heating on due to the cost of living crisis. 

“The cost of living has just skyrocketed,” Alex said. “We’ve had to turn the heating off twice. We just want to spend time with her but all my time was spent worrying”


Founding Trustee on ITV News

Joss Searchlight founder, Dianne Parkes on the partnership between Joss Searchlight and The Brain Tumour Charity. CEO Nigel Parkes said ‘The groundbreaking partnership

Proton Therapy in the U.K

Proton Therapy is an advanced form of radiotherapy that uses a precision high-energy beam of particles to destroy cancer cells.

One Small Step for DIPG

Just One Small Step…

In 1962, American astronaut Neil Armstrong’s 2-year-old daughter, Karen (affectionally known as “Muffie”), died from DIPG, a fatal brain cancer. The same cancer

Cancer - It's tough on the whole family

A gift of just £10 could help give support to a family who are struggling with a new diagnosis

A gift of  £25 per month could pay for a days pioneering research into rare brain tumours 

A gift of £50 could fund research into devastating brain tumours in a clinical trial 

Help us find a cure for rare brain tumours and give support today

Setting up a regular donation helps fund brain tumour research and increases the quality of care

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