WHO WE ARE
About us and what we do
About Joss Searchlight
Along with funding research into rare childhood brain tumours, such as DIPG, we raise awareness and provide 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.
Brain 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 we are there for the family. Whether it’s advice, counselling, specialist equipment, a break or simply pointing in the right direction, we are there.
Help us find a cure for rare brain tumours and give support to struggling families today
Setting up a regular donation helps fund brain tumour research and increases the quality of care
Joss Searchlight Started in 2011
Following the death of Joss to a diffuse brain stem glioma (DIPG), our charity was started with the ambition of shining a light in the dark world of children’s brain tumours. Originally called Joss Parkes Searchlight the name was changed a few years later to a more simple Joss Searchlight.
Although for many years we offered support to all families of a child with cancer our emphasis has always focussed on Childhood Brain Tumours.
Joss Searchlight now funds research into rare children’s brain tumours along with new treatment trials, but we haven’t forgotten our roots and still actively support families affected by a child’s brain tumour across the UK.
Founding Trustee & CEO
Nigel was Joss’ Dad and is together with his wife Dianne founded the Joss Searchlight charity.
Following a long and successful career in the Film / Television industry (absolute works.com) and publishing world, Nigel is now CEO of Joss Searchlight, where he chairs meetings, is hands on with design and marketing and oversees the day to day running of Joss Searchlight.
Shelley has considerable experience in Human Resources and has huge understanding and compassion for Joss Searchlight.
Shelley is a great all- rounder, helping to support the families, helping form plans and strategies and supporting fundraising and awareness initiatives.
Jo has considerable experience in Planning. By trade she is the Chief Environment & Sustainability Officer at Network Rail.
Jo is instrumental in engaging the community to support Joss Searchlight, hence her key role in community fundraising.
Tina has considerable experience in Management Consultancy, hence her key role is to support these areas within Joss Searchlight.
Tina supports fundraising and awareness initiatives. Tina previously worked at Macmillan Cancer Support
Even though cancer affects 1 in 500 children every year in the U.K, things are getting a whole lot better for children with cancer
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 we can't say the same for Brain Tumours in children which receives less than 1% of funding.
We need to get the cure rate up for Brain Tumours Now
If a doctor suspects a child has a brain tumour, they will refer them to a paediatrician for tests, which may include
Distributing our Christmas envelopes is a vital way to raise charity awareness
Proton Therapy is an advanced form of radiotherapy that uses a precision high-energy beam of particles to destroy cancer cells.
If you suspect your child has a brain tumour
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 any symptoms that your child may show that cause you concern will not be due to a brain tumour. However, 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 soo a 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.