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Oscar's Paediatric Brain Tumour Charity

MY NAME IS KIRSTY

Kirsty Map
What if...?

Kirstys United

My Name is Kirsty is a global phenomenon set up by one of the children we support…called Kirsty, obviously.

It is a supporter group in aid of OSCAR’s Paediatric Brain Tumour Charity and exists to raise awareness and funds to lead to research into better and kinder treatments for children affected by brain tumours.

Many people will know about Kirsty’s map where 14,000 Kirstys have signed up to support her and donate towards her cause, as well as nearly 2000 friends of Kirsty. 

You can get updates via @mynameiskirsty on Instagram and Facebook.
To be sure you don’t miss out on future updates, sign up to OSCAR’s email list at the bottom of this page.

You can also donate here.

Get your name on the map
Get your name on the map
a purpose through the pain

About Kirsty

My name is Kirsty and I am living my life slightly differently from my friends at school. It all changed at the end of Summer 2024. We were back from holiday, and I had just been to Taylor Swift’s Eras tour (amazing!) and I was looking forward to starting Year 6.

Most of the first part of my story is information that people have told me. But I remember looking at the board one day and thinking how I couldn’t quite see all the writing. Then I started to lose my memory. I fell asleep during the day. The next thing I remember is going through an MRI machine.

I was diagnosed with a brain tumour (I call him Terry). After I had recovered from my operation, we were told I would start 70 weeks of chemotherapy. This wasn’t as harsh with some side effects like hair thinning out and aches and pains, and made a real difference to my eyesight and memory. 


Then in December, I was told that my treatment had stopped working and we would need to switch to 2 new drugs, lasting for 85 more weeks. I remember being told at the hospital. I remember coming home and having to smile to my sisters until we told them.

The treatment I started – and am now on – is two different medicines: one quite similar to my old one, and one much harsher which makes me quite sick and breathless. So needing something to take our minds off everything, we came up with the idea of finding as many Kirstys/Kirsties as we can.

I don’t know what I see ‘future me’ doing. But for these next 85 weeks, and forever on, I want to make a small difference in the stories told of brain tumours. I want to hear about better treatments, ones that don’t limit the things you’re able to do. I want better outcomes for people with brain tumours. Only 1% of government funding for cancers go into brain tumours, even though it is the leading cancer killer of children and adults and that just isn’t right or fair, which is why we have to help by raising money alongside charities like OSCAR’s.

Kirsty1
Kirsty3
HELP KIRSTY's FUNDRAISING

What can you do?

Make sure you and everyone you know is on the map and have donated.

Consider setting up a monthly donation to ensure continued funding for OSCAR’s work with children like Kirsty.

Or take up the fundraising baton, and be a Kirsty who cares.

Maybe you could you fundraise to add to Kirsty’s total to support research. 
Whether that is a Kirsty Cake Sale, running 10K for Kirsty, Kirsty Collections (like the Hebden Bridge fairies…) or some other amazing event, we would love to hear what your plans are. 

You could even get your workplace to be one of Kirsty’s corporate partners and bring everyone together to support her. 

You can be part of a My Name Is Kirsty team taking on the OSCAR’s May Walking Challenge or Inflatable 5k

More details plus a list of other exciting OSCAR’s events can be found here. 

Having you involved in supporting Kirsty brings her and her family so much joy during such a difficult time.

And to learn more about OSCAR’s and their work, scroll to the bottom of the page to sign-up to their newsletter. 

Do you need any help or assistance?

Get in touch with us
Get in touch with us

Rachel James

Community Fundraising Assistant
Rachel will join our team on September 1st and will be doing a wide range of tasks including promoting the charity in the local community, developing relationships with different people and organisations, and finding new fundraising opportunities. She comes from a caring background having been a teaching assistant and emotional literacy support assistant in York for many years, and previously leading a community care team. She has also done many years of work in the voluntary sector.

Matthew Taylor

Trustee

Matthew Taylor is Director of the York Health Economics Consortium at the University of York. He has been a supporter of OSCAR’s since its inception and, through his twenty years of research into the measurement of health-related quality of life, Matthew is keenly aware of the huge benefits that new treatments can bring to people living with brain tumours.

Matthew is actively involved in national-level healthcare decision making, having had former roles as the Scientific Director of the National Institute for Health and Care Excellence (NICE)’s Economic and Methodological Unit and as a committee member for NICE’s Public Health Advisory Group. He has over fifty peer-reviewed scientific publications, including a chapter in the textbook ‘The Business, Policy and Economics of Neurosurgery’.

Ryan Mathew

Clinical Trustee

Ryan Mathew is an Associate Professor at the University of Leeds and an Honorary Consultant Neurosurgeon at Leeds Teaching Hospitals.

The Hughes Family story had a big impact on Ryan. He first learnt of the charity when he became surgeon to Oscar’s dad, Ian. After a successful surgery, he continued to show great care and concern for the family when Ian became ill again and when Milo, Oscar’s brother, was diagnosed with a brain tumour. Ryan is driven to make life outcomes better for brain tumour patients and their families. His extensive work in both research and surgery is testament to that commitment.

His clinical practice covers the full spectrum of general neurosurgery with a subspecialty in brain tumours. His research focuses on advanced brain tumour models, residual therapy-resistant glioma cell populations, local therapeutic treatments and surgical technologies and devices. He peer-reviews for several journals and grant award committees and has published numerous papers.

More information on Ryan’s work

Lisa Dawson

Trustee

Lisa has been a friend of the Hughes family since 2016 and was honoured to be asked in 2022 to represent OSCAR’s PBTC as Social & Digital Trustee.  Both Lisa and her family have taken part in numerous fundraising events and are dedicated to raising awareness of paediatric brain tumours.  Lisa is a social media content creator, blogger and writer and lives in York with her husband Joe and three children, Ella, Max and Leo.

Alice Beckwith

Trustee

Alice has been involved with OSCAR’s PBTC since 2020. She passionately supports the aims of the charity and believes that if the charity can change one life for the better, then it is a success. Working in the public sector for 18 years, Alice has helped transform Adult and Children’s Social Care Services by ensuring heavy investment in preventative services. This is why the impact OSCAR’s work will have on families is at the forefront of Alice’s motivation to be involved.

As partnerships trustee, Alice is keen to involve businesses, trusts and individuals in the work OSCAR’s does and show them the role they can have in providing the base for the charity to continue to expand its projects to help children with brain tumours.

Sarah Jane Gray

Trustee/Secretary

Sarah has over 20 years of experience in the pharmaceutical and surgical sales sector and is very familiar with the importance of medical advancements for better patient outcomes. She believes research is essential for improving diagnosis, treatment and prognosis for all children with brain tumours and hopes OSCAR’s PBTC can offer much needed funding to help push the boundaries in finding better ways of curing this devastating disease. Sarah’s focus as a treasurer will ensure record-keeping and accounts meet the conditions of the statutory bodies and compliance with regulatory organisations.

Holly Dixon

Trustee

Holly is mother to George, diagnosed with an ATRT brain tumour in 2022, and works as a primary school teacher. She believes that action to support others -however small- can make a massive difference.


She brings real-life experience of what it is like for a parent navigating everyday life, the NHS, the education system, questions from people and a lively young child with different needs.

meet the oscar's team

Sam Marino

Trustee
Sam was Headteacher at a school where Alfie Hutchinson died from an ependymoma brain tumour, at the age of 10. After becoming close with Alfie’s family Sam found OSCAR’s and reached out to the charity to help support the family, staff, children and local community. 
 
Sam understands the immediate and long term effects on a community when losing a child to a brain tumour. 
 
‘After seeing first hand the amazing work that OSCAR’s do, there was no doubt in my mind that I wanted to be part of the team. I’d like to help raise awareness in educational settings, for teachers and for parents – to empower them to seek early detection/diagnosis. Phil once said to me, ‘You never expect to become part of the brain tumour community, then all of a sudden you are.’ What an inspiring and powerful community it is.”

Marie Hughes

ChAIR OF THE BOARD OF TRUSTEES

Marie founded the charity with her husband Ian, who passed away in 2020. She is the mother of four boys. Two of Marie’s sons have died from different types of brain tumours – Oscar who was 9 and Milo who was 5 years old. She is determined to help find better treatments for brain tumours so other children won’t have to go through what her own sons and her family have.

Marie is Chair of the Board of Trustees, working closely withe the team on strategy and vision. Marie lives in Copenhagen with her two other sons, Sebastian and Lucas, and works as a Risk Manager on the Danish railway.