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Two family charities fund £400,000 towards paediatric research in memory of their sons

The Brain Tumour Charity are delighted to announce a new partnership with two Family Led Charities that share the same aims of improving outcomes for children diagnosed with high grade brain tumours

Shay’s Smiles and Joss Searchlight have collectively pledged a mighty £400,000 towards funding research through The Brain Tumour Charity into paediatric brain tumours, so future families do not have to face the heart break of losing a child that both families have tragically endured.

Shay’s Smiles – Shay’s Story

Shay Patel smiling. Money has been pledged in his name to support paediatric research.
Shay Patel, died in 2020, aged just 13

In the face of losing their eldest son, Shay Patel, who died less than two years after being diagnosed with a glioblastoma in 2020, parents Niki and Deenu set up Shay’s Smiles, a Family Led Charity that supports families of children diagnosed with a glioblastoma, as well as funding vital research to help further the desperate need for a cure.

Shay's Smiles is very excited to be working alongside The Brain Tumour Charity with our shared aims of improving outcomes for children diagnosed with high grade brain tumours. With standard of care treatments not having changed in over 30 years our focus is to facilitate access to cutting edge treatments and change the landscape for treatment options here in the UK

Niki, mum of Shay and Founder of Shay’s Smiles

Joss Searchlight – Joss’ Story

Joss Parkes smiling at the beach. Money has been pledged in his name to support paediatric research.
Joss Parkes, died in 2011, aged just 10

At just 10 years old, Joss Parkes died in 2011 from a diffuse midline glioma. This spurred his parents Dianne and Nigel to go on and set up Joss Searchlight in his memory. Along with funding paediatric research to find cures for childhood brain tumours, Joss Searchlight exists to raise awareness and provide support for families of children suffering from cancers of the brain.

We’re thrilled to have partnered with The Brain Tumour Charity and the potential of our partnership is enormous. Since the tragic death of our 10 year old son Joss we have put so much effort into supporting families going through the heartbreak of having a child with a brain tumour. Joining forces on select projects will make all our hard work worthwhile

Dianne Parkes, mum of Joss and Founder of Joss Searchlight

Changing the landscape for paediatric research

Determined to change the future landscape of paediatric research and brain tumour treatment, both Shay’s mum, Niki, and Joss’ mum, Dianne, also joined us outside Parliament on the 29 February to launch our campaign to call on the Government for a much needed National Brain Tumour Strategy.

Dianne Parkes, Joss Searchlight
Niki O’Dea-Patel, Shay’s Smiles

A heartfelt thank you

We express our most heartfelt thanks to the Parkes and O’Dea-Patel families for choosing to trust and invest in our work in loving memory of Shay and Joss. As a Charity that is passionate about collaboration, it is of the greatest of privileges to work in partnership with fellow family led charities and we look forward to celebrating future research breakthroughs in Shay and Joss’ name.. Thanks to their support, we are moving further, faster towards a cure that our community so desperately needs. Thank you to Shay’s Smiles and Joss Searchlight and all of their supporters for their unwavering support.

Phoebe Day – Family Led Partnerships Manager

You can read more about Shay’s and Joss’ stories here:


For more information on Family Led Partnerships, email phoebe.day@thebraintumourcharity.org.