Raising awareness of rare childhood cancer and funding research

Because early diagnosis can save lives

About us

Funding Research & Supporting Families

Our charity aims to make a difference in its own small way.

Research icon

Help Fund Research

Funding research and the development of kinder, targeted therapies

Love icon

Offer Financial Support

Providing financial support to UK families of the newly diagnosed

Gift icon

Give Drew’s Gift

A present for the bedside of newly diagnosed children in the UK

Paediatric chordoma research
FUNDING RESEARCH

Fighting Rare Childhood Cancer

Only £3 in every £100 spent on cancer research goes to childhood cancers. Treatment options, cure rates and research for paediatric chordoma fall well beneath other childhood cancers.

We feel passionately about funding specific projects to help progress chordoma research and improve the chances of survival for other children and their families.

As chordoma is so rare it is important to identify all children with chordoma in the UK so that we can learn more about this disease. We hope this will represent the first step towards the initiation of clinical trials of promising new drugs for paediatric chordoma.

With your help we have raised and donated to The Chordoma Foundation & The Cancer Institute UCL

£135,000

RARE CHILDHOOD CANCER

Know the Signs

Childhood cancer is more common than we may think and the symptoms can often be similar to other childhood illnesses. However, unlike other childhood illnesses the symptoms of cancer do not go away. Instead they become worse. 

If your child shows any of the signs on this list, it does not mean they have cancer. Instead they probably have a normal childhood illness. However, it is important to be aware and visit your doctor if you have any concerns.

Feeling tired all the time

Unexplained changes in behaviour or irritability

A pain that doesn’t go away

Bruising, bleeding or blood in their wee

Unexplained fever, night sweats or vomiting

Changes in the appearance of the eye, or unusual eye reflections in photos

Headaches that won’t go away

Persistent tummy pain or swelling

Problems with vision, or a new squint

Mother hand holding child hand who have IV solution in the hospital with love and care
SUPPORT & INFORMATION

Supporting Families

In the initial stages of diagnosis everything is alien to you. The language, the medication, the treatment, not to mention the fact that you may very well have to spend long stretches of time away from home.

Trying to come to terms with your situation can leave you feeling very isolated. It is important that you reach out and find support to help you through this most difficult of times.

We offer a grant system for newly diagnosed children with chordoma in the UK, to help parents through the shockwave of diagnosis. This grant offers some financial support to assist with the day to day living costs of being in hospital.

Bursting with love and adventure

Drew’s Gift – a children’s story book

Drew had a love of literature from a very early age. He adored reading stories of great adventures and magical journeys. He was fascinated with pirates and a firm believer in fairies. In his memory, we wanted to develop a story of his very own. Something that other children could share in.

Drew, Moo and Bunny, Too is provided as Drew’s Gift. A present for the bedside of newly diagnosed children in the UK.

You can also help raise funds for our charity by purchasing a copy of Drew, Moo and Bunny, Too from Amazon or your local bookshop.

Drew, Moo & Bunny too book cover, written by Owen Sheers and illustrated by Helen Stephens
GET INVOLVED

Help Us Raise Funds

There are various ways you can support our charity, to help us fund research and support families affected by this rare childhood cancer.

Donate

It would not be possible to do what we do without your support. Our charity is run on a voluntary basis, so every penny you donate really does make a difference.

Attend an Event

Why not come along to one of our fundraising events. It’s great way to show your support and help us raise essential funds for rare childhood cancer research.

Fundraise for Us

If you would like to hold your own fundraiser for our charity, please get in touch. We welcome your support and will help you in every way we can.

Our EVENTS

Attend an Event

The Drew Barker-Wright Charity organises regular events to help raise funds for chordoma research and to help children and families affected by this rare childhood cancer.