Thank you for visiting our JustGiving page.  Of the 1m people in the UK expected to experience dementia by 2025, up to 20% will be living with a rare dementia. That's 160,000 people directly affected and many more of their family members, friends, healthcare professionals and employers. Unusual and young onset dementias are under-researched, under-recognised and under-supported.

We work as part of the team that conduct research at UCL's Dementia Research Centre (DRC), and help to run the Rare Dementia Support (RDS) service. We see and hear the difficulties and challenges faced by people living with a rare dementia – and their families – every day. 

It is this that has spurred us on to form our very own RDS Marathon Team! Anna Volkmer and Chris Hardy will be running the London Marathon on Sunday 3rd October 2021. This is the (twice!) rescheduled event that we were originally due to take part in back in April 2020.

The National Brain Appeal has raised funds for RDS since the support groups were established.  The charity is supporting the expansion of this service through its dedicated fund over the next three years. 

Alongside this, it is also launching a capital appeal to create a permanent home for RDS in the form of the world’s first Centre for Rare Dementia Support near Queen Square.   We are raising funds to help establish this Centre.

The Centre will:

• Support: guide and empower people living with rare dementias and their families.
• Educate and train: for professionals (such as speech therapists, nurses, physiotherapists, opticians and GPs) who work with people living with rare dementias.
• Research: research the impact of support services on people living with rare dementias: both for people with a diagnosis, and for their carers and families. 

The Centre will be an example of how best to support those living with a rare dementia, through the involvement of members in research. It will lead in the bespoke education of families, and healthcare and other relevant professionals on rare dementias.