THE CHILDREN'S BRAIN TUMOUR CHARITY

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Who are we Funding

Research into Rare Brain Tumours is vital

Why we need funding for research and what we're doing with it

Joss Searchlight are dedicated to the funding of scientific and clinical research into the most rare and devastating brain tumours in children, along with  improved diagnostics, treatment and care.

Our research funding is designated for developing treatments that are less toxic to children and to finding treatments for rare brain tumours, e.g DIPG/DMG to extend and improve life and hopefully prevent aggressive tumours in the future. We plan to collaborate with large cancer organisations e.g The Institute of Cancer Research, London to provide funding for rare childhood brain tumours over the long term.

Our financial support, together with collaboration with other cancer organisations, charities and advocacy groups will make a contribution towards improving the outcomes for children with rare brain tumours including DIPG/DMG.

Brain tumours are the biggest disease related killer of our children and Joss Searchlight is a dedicated funder of DIPG/DMG research.

Joss Searchlight supports the discovery of new knowledge to advance paediatric research into childhood brain tumours, with a focus on the deadliest of all tumours DIPG (Diffuse Intrinsic Pons Glioma) /DMG which kills 100% of all children suffering from it.

Our research strategy focuses on what matters to families living with DIPG/DMG. We will fund science of the highest quality across the world that has the potential to deliver for DIPG/DMG sufferers.

 

Key Areas of Interest

Children’s brain cancer is different to adult cancer

The drugs and methods used to treat adults are not transferable and currently there is no research finding that behavioural / lifestyle changes prevent childhood cancers.

Clinical trials are expensive

Because of the rarity of children’s brain cancer compared to the big 5 adult cancers there is little economic incentive for pharmaceutical industry sponsors. Furthermore it can be difficult to access targeted drugs due to complicated distribution rights and excessively complicated administrative procedures and regulations. This makes trials less likely to attract sponsorship from biopharmaceutical companies.

Joss Searchlight continues to support changes in legislation and supports initiatives to improve the situation for children affected by brain cancer.

Our brain tumour community needs the impact for children with little or no hope to change

In the 1960’s childhood leukaemia killed 80% of all child victims. Now 50 years after extensive research began 80% of children with leukaemia survive. In adults with breast cancer the survival rate has doubled in 40 years.

Brain tumours are the biggest disease related killer of children yet receives a pitiful amount of funding into research. In the UK only 1.5% of all cancer research funding is allocated to research of brain cancers

Joss Searchlight are working with other leading brain cancer charities and with Cancer Research to provide funding for DIPG/DMG research. Every project has input from their Scientific Advisory Boards and ensures the research is built on existing knowledge. This will ensure that we put our limited resources in to the projects that have the best opportunity for success.

Led by our common experience program

The voices of the families that we support via our ‘common experience’ program are at the heart of everything we do and lead our strategy for our research selection.

Research is needed into DMG diffuse midline gliomas aka DIPG, including investigation into causes. This could help develop new treatments for future generations.

Due to insufficient research the causes of rare childhood brain tumours, including DMG/DIPG are unknown and chemotherapy drugs used to treat other high grade tumours in other parts of the brain have not been effective in treating children with DMG/DIPG. This is one of the most difficult things for a parent to accept, that for their child there is no hope. Families are left feeling helpless.

Life changing discovery depends on exceptional clinical research. We need help to raise awareness and funds to support this.

Please help us to make progress with research into rare childhood brain tumours.

 

Support Workers Funding

In order to supply support workers where and when they are needed, funds are also needed to fund Support Workers.

These important people will supply vital support and guidance to families when the going gets tough.

As well as providing practical support they can also be a listening,understanding and compassionate ear.

Camille - diagnosed with a brain tumour

£10

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

£25

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

£50

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

In the UK only 1.5% of all cancer research funding is allocated to brain cancers
and just 0.005% to DIPG - this needs to change

Help Joss Searchlight find a cure for some of the rarest brain tumours and give support to families

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Challenge yourself at a sporting event. 

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Something Special Art Event for Joss Searchlight

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Fighting to make all brain tumours curable

Scarlet's Story

Seven-year-old Scarlet, was diagnosed with a rare brain tumour, pineoblastoma, which spread to her spine. She underwent an emergency operation and received chemotherapy and radiotherapy. Sadly, Scarlet relapsed and died after a 3 year battle. Scarlet died peacefully with her parents, Kate and Kris by her side. 

Kate said : “Scarlet battled every day, but the cancer did a lot of damage. We didn’t want her to suffer any more”

Scarlet visited Disneyland Paris and received VIP treatment at the Disney on Ice show. Kate added: “We’re so grateful everyone wanted to help Scarlet fulfil her dreams. Despite being ill, she had a ball – every day was special.”

Despite being ill, she had a ball - every day was special

Help Us Make a difference

Donating to Joss Searchlight does so much more than you think. We fund research, educate and support families

we'd love to be friends

We promise not to inundate you with emails or messages – that’s not our style.

But when it’s really important, like a piece of research that you’re funding is getting results, it would be great to let you know.

And we will never pass on your details – guaranteed

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