A terminal brain cancer patient is hoping to launch a charity dedicated to supporting those with neurological illnesses to plug “gaps” she has identified through her own experience.
Sophie Reid was diagnosed with an astrocytoma in December 2024.
Over the past year, she has been documenting her cancer journey online to raise awareness and educate viewers on the reality of life with a brain tumour.
This led to the launch of her ‘Jersey Brain Tumour Support Group’, which connects islanders affected by a brain tumour diagnosis.
Following her experience of cancer and brain tumour care within the island, Sophie explained that she has since identified gaps in local care which she hopes to improve through the creation of her own charity.
Express sat down with Sophie to hear more about her plans to launch a charity dedicated to supporting those with neurological illnesses…
Can you give us an update on how your plans to set up a charity are going?
Since announcing it at the Pride of Jersey Awards, the idea has very much turned into something real.
The charity is now formally taking shape, with the mission, values, and areas of focus clearly defined.
I’ve been having ongoing conversations with healthcare professionals, local charities, and government contacts to make sure what we’re building genuinely fills gaps in support rather than duplicating what already exists.
It’s been a careful, considered process, but one driven by lived experience and a clear need within the island.
What is the name of the proposed charity and the meaning behind it?
The charity will be called The Sophie Reid Neurological Association. While it carries my name, it isn’t about me, it’s about using my experience and platform to help others.
Neurological illness can be isolating, frightening, and often misunderstood, and the association is intended to be personal, approachable, and rooted in the real experiences of islanders navigating neurological diagnoses.
What services will the proposed charity offer and what is its purpose?
The purpose of the charity is to improve the lives of people in Jersey affected by neurological illnesses through awareness, advocacy, and support.
It will operate as a conduit charity, working alongside existing organisations and the Health Department to ensure patients are properly signposted to the right services at the right time.
Where gaps exist, the charity will explore funding initiatives, services, or financial support in exceptional circumstances, always with dignity and compassion at the centre.
You have previously mentioned that you want to raise money to fund a specialist nurse for neurology. What is involved in the role and how would that benefit islanders?
A neuro clinical nurse specialist plays a vital role in supporting patients with neurological conditions.
They provide a consistent point of contact, help patients and families understand diagnoses and treatment plans, coordinate care between departments, advocate for patients, and offer emotional and practical support.
For islanders, this would mean fewer people falling through the cracks, better continuity of care, reduced anxiety, and a far more humane experience during what is often the most frightening period of someone’s life.
Who will be able to benefit from the proposed charity and use the services?
The charity is intended to support anyone in Jersey affected by neurological illness, including patients, families, and carers.
This includes conditions such as brain tumours, epilepsy, MS, Parkinson’s, and other neurological diagnoses.
Support will be based on need rather than diagnosis alone, recognising that the impact on families is often similar across conditions.
Have you received support or encouragement from local officials?
Yes, I’ve received encouragement and open engagement from local officials, including the Health Minister Tom Binet.
The conversations so far have been positive and constructive, with a shared understanding that improving neurological care and patient experience requires collaboration.
The charity’s partnership-focused approach has been welcomed.
What has been involved in the process of setting up a charity?
Setting up the charity has involved significant behind-the-scenes work, including developing a clear mission, governance structure, and ethical framework, as well as engaging with healthcare professionals, charities, and policymakers.
It has also required careful reflection on lived experience to ensure the charity remains patient-led, credible, and sustainable.
It’s not something I wanted to rush, because getting it right really matters.
What are your 2026 goals for the proposed charity and what can we expect to see happening next year?
In 2026, the focus will be on formally launching the charity, strengthening partnerships, and beginning tangible support work.
This includes fundraising towards a neuro clinical nurse specialist role, expanding awareness and education campaigns, and establishing clear pathways for patient signposting and support.
By the end of 2026, the aim is for the Sophie Reid Neurological Association to be a trusted, visible presence in Jersey, making a meaningful difference to people’s lives, and ensuring no one facing a neurological diagnosis feels alone.