WHAT A NIGHT!

Last night I wrapped up my baby and took him out on the town for his first night out – it was a night I just couldn’t miss. My friends, all trustees of the charity too, joined Milo and I, which turned out brilliantly for me as it meant I could sit back and relax whilst sending them off walking the pram after feeds or rocking Milo to the clapping and music. As always they were right there next to me at what turned out to be a very emotional and inspirational evening.

We were invited to York Racecourse to celebrate “York’s unsung heroes” and I was up for an award as Charity Fundraiser of the Year. I am pleased to say I won the award, but I can’t take all the credit. The ceremony was for Community Pride and that is very poignant, as what I have been part of achieving could not have been done without the fantastic community we have around us. We have friends, family and businesses around us who all support us and I dedicate this award to all of you.

The work I do with the charity would not be possible without everyone chipping in, be it as a friend for me to run things by; trustees with ideas, hard work and support; fundraisers at various events; supporters showing that they believe in the charity by donating; family giving time and encouragement; or businesses showing their support and creating awareness of us.
However, as with everything I do these days, there is always the bittersweet twist to it. How amazing to be here and be part of this, but how sad that Oscar isn’t standing next to me and doing this with me. Two years ago, he won Child of the Year at these same awards for his fundraising efforts to help other children in the same situation as him, and now we all continue this in his spirit. Please read through the nomination letter below that was sent to the Community Pride committee – the person who nominated me knows me well and has captured the inspiration that was Oscar!!

MARIE’S NOMINATION LETTER

Marie Hughes lost her son Oscar to a brain tumour last year when he was just 9 years old. Oscar was diagnosed in February 2013, just before his 8th birthday. Following an operation to remove the tumour, Oscar had to undergo a difficult and gruelling six weeks of daily chemotherapy and radiotherapy, and a further 12 months of chemotherapy.
In March 2014, as he was nearing the end of his treatment, Oscar relapsed. There was a small chance of getting him onto a trial that could have saved his life so Oscar’s family and friends, led by Marie, launched an appeal to raise money. It brought in £40,000 in less than a fortnight. Sadly Oscar died in early May, but since his death Marie has devoted her time to setting up a charity in his name. The charity aims to fund much needed research into paediatric brain tumours. It’s called OSCAR’s (Ongoing Support Care And Research) Paediatric Brain Tumour Charity (www.oscarspbtc.org) and it launched in November 2014, just over six months after Oscar died. In under a year, Marie tripled the £40,000 to £120,000.
The charity will partner with national charities including The Brain Tumour Charity, as well as local Yorkshire cancer organisations, to fund research that is looking to find a cure and also less devastating forms of treatment for all children who are diagnosed. Marie announced the charity’s first major research project in April this year, a partnership with The Brain Tumour Charity and Cancer Research UK, which will look at delivering chemotherapy drugs directly into the brains of children with recurrent tumours, rather than orally or intravenously as usually happens.
While the purpose of the charity is to raise money towards research into paediatric brain tumours, Marie has also worked hard to ensure that the way the charity raises money is fun, innovative and also involves children. It was important to Oscar, even while he was going through chemotherapy, that he continued to play sports and show his friends and his two brothers the importance of exercise. The fundraising and awareness building methods that Marie is using ensure that Oscar’s spirit is at the heart of everything the charity does.

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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

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.