Hello everyone,
By sharing your story with your elected representative, be they an MP, MS, MSP or MLA, the cause for brain tumour patients and their families, demanding a pathway to improved options and outcomes, can be heard in the corridors of power.
What better example than Laura Kurtul whose son Taylan was just six years old when he died from a medulloblastoma in February 2024, nine months after diagnosis?
Following Laura’s meeting with her MP, Alberto Costa for South Leicestershire, the Prime Minister has pledged his commitment to “life-saving research” to improve outcomes for brain tumour patients and their families.
During Prime Minister’s Questions on Wednesday 19th March, Mr Costa asked the PM if he would agree to arrange a meeting for Laura with the relevant health minister.
Keir Starmer was moved to give his support in the House of Commons. He said: “The loss of a child is simply unbearable, and I think most of us, including myself, simply wouldn’t know how we would be able to react. I think the whole House will want to send its deepest condolences to Laura and to all of Taylan’s family and friends. I will happily make sure that a meeting takes place so we can reassure that we are committed to supporting life-saving and life-improving research and doing all we can to improve how we prevent, detect, manage and treat cancer.”
As the PM delivered his statement the Secretary of State for Health and Social Care, Wes Streeting, was nodding in agreement.
Laura said: “I’m feeling overcome and emotional, this has all happened so quickly. I met with Alberto on Friday 14th March and he was so moved, so affected, by Taylan’s story, he immediately said, ‘We need to take this to Parliament’.
“Hearing Taylan’s name spoken in the House of Commons by Keir Starmer was incredibly overwhelming. It means so much to us but equally, it really hit hard that this is our heartbreaking reality.
“To have the Prime Minister’s support is a monumental step forward in making a change for children, families and all those affected by a brain tumour.
“Thank you to Alberto for raising this at the highest level for all of us who have suffered the utter devastation of losing a child to this cruel disease. By taking action now, we might be able to spare other parents from going through this never-ending heartache.”
We were pleased to have the opportunity to talk about Taylan, Laura, her MP and the PM on BBC Leicester’s Breakfast show on Thursday further raising awareness.
Together with her husband, Toygun, Laura set up the Fundraising Group, Tay’s Tribe.
Left to right: Debra Gibbon, Mike Hedges MS, Policy and Public Affairs Manager Thomas Brayford, Rhys Holmes
This week, Mike Hedges MS delivered a compelling 90-second statement in the Senedd to mark Wear A Hat Day 2025, making the case for better support and treatment options for brain tumour patients in Wales.
In his statement, Mr Hedges emphasised the critical need for greater accessibility to clinical trials, ensuring that patients have the opportunity to participate in potentially life-saving research. He also highlighted the importance of improving awareness of available treatment options, stressing that families must be equipped with the knowledge and support necessary to navigate a brain tumour diagnosis.
Mr Hedges’ call to action underscores the ongoing need for better research, improved access to clinical trials, and increased government support to tackle the challenges faced by brain tumour patients.
Thomas, who looks after our campaigning in the devolved nations (as well as doing many other things) said: “We are incredibly grateful to everyone that joined us last week for our event in the Senedd marking Brain Tumour Awareness Month, and thankful for Mr Hedges' ongoing support. Brain Tumour Research will continue calling for policy reforms to ensure that brain tumour patients receive the care and opportunities they deserve.”
You can view Mike Hedges’ 90-second statement here.
Cancer52 recently hosted the Big Cancer52 Conversation in Manchester where the focus was on sharing best practice, exchanging ideas and exploring collaborations.
Thomas spent the day in Manchester, where topics included:
- pioneering approaches and valuable lessons that can be applied broadly
- collaborative efforts to reduce health inequalities
- the importance of involving people with lived experience in service design and policy
- the crucial role of community organisations in tackling cancer inequalities through grassroots initiatives
The event concluded with reflections on key takeaways and next steps to turn discussions into actionable strategies for addressing health inequalities among rare and less common cancers.
The Cross-Party Group (CPG) on Brain Tumours held its Annual General Meeting (AGM) on Monday 31st March, reaffirming its commitment to advancing research, diagnosis, and treatment for brain tumour patients in Scotland.
Convener Beatrice Wishart MSP, pictured above (left) with Jackie Baillie MSP (right), who was also at the AGM, welcomed everyone to the meeting and sought approval for the previous meeting's minutes. Ms Wishart was re-elected as Convener for another year, with Brain Tumour Research providing the secretariat. Deputy Convener Colin Smyth MSP commended Brain Tumour Research for organising excellent meetings since the Group’s inception.
The CPG on Brain Tumours serves as a collaborative platform, bringing together Members of the Scottish Parliament, researchers, clinicians, patients, charities and advocacy groups to address the challenges faced by the brain tumour community. The group’s objectives include increasing awareness, promoting early diagnosis, and advocating for enhanced research funding to improve patient outcomes.
In previous sessions, the CPG has highlighted critical issues such as the need for better access to advanced treatments like Proton Beam Therapy. Experts, including Professor Anthony Chalmers from the University of Glasgow, have emphasised the importance of increased investment in research to develop more effective therapies.
Now Brain Tumour Awareness Month 2025 is over, please remember that at Brain Tumour Research every day is brain tumour awareness day, every month is brain tumour awareness month. We live this as you do. For all of us this is personal and that is why we must work together to amplify our voice. Together we will find a cure.
That is it for the update this week – we will be back next Friday.
We all wish you a peaceful time until then.
Karen, Hugh and Thomas.