£2.7m gift secures site for world-first Rare Dementia Support Centre at UCL

The award has enabled the purchase of two townhouses on Woburn Square, Bloomsbury, near to existing support services for rare dementias at UCL Queen Square Institute of Neurology.

Following a programme of dementia-friendly refurbishment works, the site is due to become home to the new Rare Dementia Support Centre – the first of its kind in the world – from late 2025.

More than 55 million people globally live with dementia, with between 5-15% of those diagnosed with a “rare” form of the disease which is proportionately more likely to develop in people under the age of 65.

However, there is a comparative shortfall in dedicated resources to support these patients, as well as families and practitioners.

Rare Dementia Support at the UCL Dementia Research Centre provides specialist support groups and bespoke guidance and education for people living with (or at risk of) inherited, atypical and young onset dementias, as well as opportunities to participate in clinical trials and research initiatives.

Funded by The National Brain Appeal, the work of the service has grown substantially over its 30-year history and now provides invaluable support for seven rare dementias to more than 5,000 active members.

The new centre will help to guide and empower those affected, educate and train professionals (such as speech therapists, nurses, physiotherapists, opticians and GPs) and undertake vital research, as well as provide dedicated spaces for physical, artistic and cultural activities in a home-from-home environment.

“Creating a bespoke space where we can provide specialist help and guidance for people living with rare dementias has been our dream and our vision for many years,” said Professor Nick Fox, consultant neurologist and director of the UCL Dementia Research Centre. “To see it getting closer to becoming a reality is so incredibly heartening.”

“The centre will be a world-first and will make a real difference to families facing the most difficult of situations.”

“It is our work with visionary donors like The Hilary and Galen Weston Foundation that enables UCL to be at its very best”, said Angharad Milenkovic, UCL Vice-President (Advancement). “The Rare Dementia Support Centre is a perfect example of that, and we are extraordinarily proud to host a service which brings world-leading expertise to many thousands of people affected by rare dementias.”

The £2.7 million award by The Hilary Galen and Weston Foundation forms part of a £7 million capital campaign by The National Brain Appeal, which has also received significant philanthropic support from the Garfield Weston Foundation, Iceland Foods Charitable Foundation, and Rosetrees Trust, as well as large numbers of individual donors.

“We are very grateful to The Hilary and Galen Weston Foundation, the Garfield Weston Foundation, Iceland Foods Charitable Foundation and Iceland Foods stores, Rosetrees Trust and to everyone who has made donations and shown incredible commitment to fundraising to help us to make this vital centre a reality,” said Claire Wood Hill, chief executive of The National Brain Appeal.

“The Rare Dementia Support Centre really will transform the lives of people affected by these devastating conditions.”

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‘Generous donations secure buildings for world-first Rare Dementia Support Centre’ – via The National Brain Appeal

Links

UCL Giving – Neuroscience
The UCL Dementia Research Centre
Rare Dementia Support
The Hilary and Galen Weston Foundation
The National Brain Appeal
BBC documentary: The Jennings v Alzheimer's (via BBC iPlayer)

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By the National Brain Appeal.