I have a rare hereditary gene that causes Alzheimer’s in midlife. At 47 I am symptomatic and making the most of life doing things that I love with the people that I love!

I am doing London Marathon dressed as an American School Bus Costume 🚌 because I live on an American school bus in Kessingland at The Hollies in Kessingland, Suffolk with my husband Chris & and my springer spaniel Monty.

Any donation will make a big difference to families like mine - my rare dementia friends that I’ve made are simply the best!

The National Brain Appeal's campaign to establish the world's first Centre for Rare Dementia Support.

The National Brain Appeal has supported Rare Dementia Support (RDS) since the first meetings in 1994. RDS runs regular, specialist support groups, in London and regionally, provides newsletters, contact networks and an digital platform with access to information and advice for people living with or at risk of inherited, atypical and young onset dementias. Our vision is to support all these people by substantially expanding RDS.

The Rare Dementia Support Centre will exemplify how best to support those living with a rare dementia, through the involvement of its members and visitors in research and will lead in the bespoke education of families, healthcare and other relevant professionals.