A world-leading centre, which will offer critical services for around 10,000 visitors, is to be named in memory of Hilary and Galen Weston, who helped to inspire its creation.
Due to open in 2026, the new centre is being delivered in partnership between UCL and The National Brain Appeal. In addition to establishing a permanent space to house the Rare Dementia Support (RDS) service, it will enable the expansion of specialist social, emotional and practical support services, leading dementia research and education for people across the UK.
The purchase of the property in Woburn Square, central London, was made possible by a £2.7 million donation from The Hilary and Galen Weston Foundation to UCL, as part of a £9.9 million capital appeal led by The National Brain Appeal.
In recognition of the Foundation’s generous contribution, the centre will be named The Hilary and Galen Weston Rare Dementia Support Centre. The Weston family has a longstanding history of supporting transformational research and support services, including those for individuals and families impacted by dementia.
“The naming of The Hilary and Galen Weston Rare Dementia Support Centre is a tremendous milestone in our shared vision to create a bespoke space which provides specialist help and guidance for people living with a rare dementia diagnosis,” said Professor Nick Fox, co-director of the centre.
“Rare dementias are significantly under-served by existing services - they are incredibly isolating conditions that lead to a loss of connection with self and society and devastating impacts on the people who care for, and about, that person - their families, friends and close communities.”
A home-from-home for the rare dementia community
Funded by The National Brain Appeal, RDS currently provides a vital lifeline to more than 8,000 members in the UK. In its first year after opening, RDS is anticipating nearly 10,000 unique visits to the centre.
It is estimated that approximately 15% of people with dementia receive a diagnosis of a rare, inherited, or young onset form of the disease, often characterised by unique and complex challenges that can include difficulties with vision, language, movement and behaviour.
RDS services include diagnosis support, one-to-one and family guidance and counselling, small and large support groups for different forms of dementia, carers groups, educational programmes and social, creative and cultural programmes. RDS also equips healthcare professionals with the training they need to better support people affected by rare dementias, carries out critical research and supports individuals who choose to take part in studies.
To meet these needs, the future site is undergoing careful redevelopment based upon dementia-friendly design principles, creating a welcoming, accessible and inclusive environment where people living with, or affected by, rare dementias can feel truly supported. This will include a substantial kitchen at the heart of the centre, with lounge areas for larger group discussions and smaller rooms for conversations between individuals, families, advisers and therapists. There will also be dedicated spaces for physical, artistic and cultural activities.
“The Hilary and Galen Weston Rare Dementia Support Centre will be a world-first,” said Claire Wood Hill, chief executive of The National Brain Appeal. “It really will transform the lives of people affected by these devastating conditions and we are very grateful to everyone who has made donations and shown incredible commitment to fundraising to help us to make this vital centre a reality.”
Life-altering philanthropy in partnership
Further to its three decades of support for the RDS service, the wider capital appeal for The Hilary and Galen Weston Rare Dementia Support Centre has been led by The National Brain Appeal, working closely with UCL.
In addition to The Hilary and Galen Weston Foundation, generous support has been provided by the Garfield Weston Foundation, Iceland Foods Charitable Foundation, the Wolfson Foundation, B&H Foundation, Rosetrees, Alzheimer’s Society, and UCLH Charity. Further, numerous National Brain Appeal supporters, many of whom are RDS members, took on challenges, held gala dinners, hosted community fundraisers, and together donated an outstanding sum.
“We are truly grateful to The Hilary and Galen Weston Foundation and all those who have partnered with UCL and The National Brain Appeal on this important work,” said Professor Fox. “Their commitment will enable us to make a profound difference for people facing the most difficult of situations, train the professionals who will work alongside families each day, and raise ever greater awareness about conditions that can and do affect so many of our lives.”
About
UCL is at the forefront of the mission to prevent, treat and cure dementia and other devastating neurological diseases. The university has worked at the frontiers of brain science for more than 150 years and has nurtured the largest group of neuroscience experts in the world, creating a top-ranking research powerhouse which has produced nine Nobel Prize winners.
With the support of its donor community, including The National Brain Appeal, UCL is also building an exceptional new home for 21st century neuroscience at 256 Grays Inn Road in central London.
The National Brain Appeal exists to transform the lives of the millions of people affected by neurological conditions, supporting a wide range of causes including world-leading care at the National Hospital for Neurology and Neurosurgery and trail-blazing research at the UCL Queen Square Institute of Neurology.
It has fundraised for the UCL-run RDS service since its creation in the early 1990s and has raised more than £9m for The Hilary and Galen Weston Rare Dementia Support Centre. The National Brain Appeal provides funding each year for RDS to develop support, education and research for the seven rarer dementias which include: frontotemporal dementia (FTD); posterior cortical atrophy (PCA); primary progressive aphasia (PPA); familial frontotemporal dementia (fFTD); familial Alzheimer’s disease (fAD); young onset Alzheimer’s disease (YOAD); and dementia with Lewy bodies (LBD).
The Hilary and Galen Weston Foundation is a private family foundation whose goal is to contribute to charities whose bold ideas shape a better future for everyone. Its granting focuses include medical research and support, the environment, women’s empowerment, the arts, and humanitarian relief.
Links
Rare Dementia Support service
The National Brain Appeal
UCL Dementia Research Centre
UCL Queen Square Institute of Neurology
UCL Giving
Images
Top: The exterior of the townhouses under renovation (left), and an artist’s impression of a group support room inside the centre (right).
In-article: The Hon. Hilary M. Weston C.M., C.V.O., O.Ont. and Mr. W. Galen Weston, founders of The Hilary and Galen Weston Foundation.