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The Brain Tumour Charity and Meningioma UK are to merge

Accelerated by the impact of COVID-19 which has seen demand for support services soar, the merger is the latest move towards consolidation in a sector historically populated with small charities, many of them founder-led.

The Brain Tumour Charity – created in 2013 and now the largest charity in the field, with an annual income of around £12m – was itself born out of a merger between three organisations: the Samantha Dickson Brain Tumour Trust, the Joseph Foote Trust and Brain Tumour UK.

Named as Charity of the Year at the Third Sector Awards in 2018 and recently one of the best Charities to Work For, The Brain Tumour Charity funds research into all types of brain tumour as well as offering support to those affected and raising awareness of the signs, symptoms and impact of the disease in adults and children.

Meningioma UK was founded in 1998 by Ella Pybus and Dr Caroline Rutgers, both of whom had been diagnosed with a meningioma – a type of tumour which develops in the meninges (the protective layer which surrounds the brain and spinal cord).

The charity focused on offering support and information to people affected by a meningioma.

Following Dr Caroline Rutgers’ death, Ella Pybus remained at the helm of Meningioma UK until the decision to merge with The Brain Tumour Charity.

Ella Pybus said: “Our community was always at the heart of this decision. Together, with unified resource and vision, we will be able to support more of, and do more for, the thousands of families whose lives are shattered by a meningioma diagnosis.

“This merger will build on the successes of the two charities and create a stronger, more powerful voice for change in the future.”

Sarah Lindsell, chief executive of The Brain Tumour Charity, said: “This merger brings together two charities with huge mutual respect and a passionate commitment to the communities they serve.

“As more charities than ever face an uncertain future in the wake of the coronavirus outbreak, the need to unite in order to better serve our communities is clear. Joining forces will enable us to work more effectively for everyone affected by a meningioma and to accelerate progress towards the cure that is needed so urgently for everyone whose life has been changed by a brain tumour diagnosis.

“I hope this decision paves the way for further steps towards uniting more of the charities striving towards that vital goal.”

The merger has been welcomed by leading figures in the brain tumour community.

Professor Richard Gilbertson said: “This merger is extremely exciting news. Creating larger communities that work together to advance understanding and treatment of rare diseases is critical.

“The merger will accelerate progress, without doubt; driving new research and improving clinical practice, allowing the voice of many, not a few, to be heard.”

Meningiomas are the most common form of brain tumour in adults, accounting for around one in three of those diagnosed. The vast majority of meningiomas are low-grade (non-cancerous) but they can cause significant health problems and damage to quality of life.

High-profile figures who have been diagnosed with a meningioma include supermodel Caprice Bourret and TV and radio presenter Nicki Chapman.

Nicki said: “I’m a huge supporter of The Brain Tumour Charity for very personal reasons. I was diagnosed with a benign meningioma in April 2019 with an operation to remove as much of the tumour as they could a few weeks later.

“I’m thrilled to hear that The Brain Tumour Charity will shortly be merging with Meningioma UK to provide even more support, much needed research and the one thing we are all hoping for … finding a cure.

“These two charities have done tremendous work over the years, coming together will enable them to help and support people like you, me, our dearest friends and family which we all know makes such a difference.”