How is Rare Dementia Support funded?

national brain appealRare Dementia Support is a fund held by the National Brain Appeal, the charity dedicated to supporting the work of The National Hospital for Neurology and Neurosurgery and the Institute of Neurology in Queen Square, London. The fund raises money to provide specialist support group services for individuals living with or affected by one of five less common dementia diagnoses.

The services provided by Rare Dementia Support rely on funding from donations, grants and trusts, and supporters taking part in fundraising. The fund aims to raise £100,000 annually in order to maintain and extend the existing support service, and facilitate further access to online resources and information.

To make a donation to the Rare Dementia Support fund you can:

  • Visit our page on JustGiving
  • Text RDSF84 plus the amount you would like to donate (e.g. £5) to 70070
  • Please contact The National Brain Appeal on 020 3448 4724 for details about how to donate by bank transfer
  • Please make cheques payable to “National Brain Appeal – Rare Dementia Support”. They can be posted to:

The National Brain Appeal
Box 123
Queen Square

Seb_Crutch_photo_small“People with rarer and young-onset dementias often struggle to find appropriate information and support networks, as their needs and experiences vary greatly. Our support groups can be a lifeline for people affected by a rare dementia so they can find out more about the condition and research taking place, as well as meeting others in the same position. Additional funding will help us move closer to our vision of providing specialist support for all individuals with or at risk of one of these rarer forms of dementia.”

Prof Sebastian Crutch,
Neuropsychologist, Dementia Research Centre.

Fundraising stories

Anybody can help fund Rare Dementia Support, and we’re incredibly grateful to all the people who have taken part in all kinds of fundraising activities for us. We’ll soon be updating this site with many  stories of the fantastic fundraising activities our supporters have pursued. Find out more about fundraising on our JustGiving page.

ARUK_campaign_logo_web_smallThanks to a £23,000 funding boost from Alzheimer’s Research UK in 2016, people affected by rare dementias will have more opportunities to engage in research and access support.  This additional funding will help the UCL team to support the dissemination of information across the support group network, as well as setting up new groups to engage people with research taking place throughout the country.


Rare Dementia Support is a fund held by the National Brain Appeal (registered charity number: 290173).

Kell’s Ride Greg Kelly

Kell’s Ride for the Future, Spotlighting Younger Onset Dementia, Worldwide.

Greg Kelly, was diagnosed with Younger Onset Dementia – FTD (BV).

This year Greg embarked on a journey to raise awareness of YOD, by riding a Harley Davidson the length and breadth of Australia. He completed the 11 week ride late last month, and is now preparing another ride in New Zealand during March next year.  In 2019 he plans to ride the length and breadth of USA , and would then like to do the same in Great Britain in 2020.

Film maker, Elizabeth McLeish, has produced a short documentary about Greg, titled Kell’s Ride. She will accompany Greg on his NZ ride as she is now producing a feature length documentary – Kell’s Ride for a Cure….

Below are links to various social media sites, where you can find out more about Kell’s ride and how to help him in his fundraising efforts.