Story
My wonderful dad was diagnosed with a rare type of dementia called frontotemporal dementia with language variant just under three years ago when he was only 63. His symptoms started a few years prior to this but it took a long time to get a diagnosis. This type of dementia causes the sufferer to lose their expressive language first as well as eventually causing memory loss and confusion. As a family my dad’s diagnosis has been heartbreaking not least of all for my mum. There is no medication for this type of dementia and the support is limited especially due to COVID. My mum is amazing and plans to look after dad at home for as long as possible. For now we are making the most of spending time together as a family and my dad enjoys nothing more then spending time with his grandchildren who adore him.
Two months ago I decided to buy myself a bike and signed up for London to Brighton on the 19th September to be part of fundraising for rare dementia support. My dad was a cycling enthusiast and even completed the 175km ride around lake Geneva when he was exactly my age. I thought it was about time I did something positive towards my dad’s situation rather than just feeling resentful and sad about it. I’ve already been training a lot and have been enjoying long bike rides through the countryside. I’ve chosen this charity as there isn’t enough support and research for rare types of dementia that are more likely to affect younger people. I’m so grateful for any donations.
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.Please help The National Brain Appeal reach the first million of this campaign to create the worlds first centre of excellence for rarer dementias.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.