Today is Rare Disease Day and to mark it, we’re officially launching Rare Dementia Support – a fund that is the result of a merger of two existing funds – the FTD Support Group Fund and the Myrtle Ellis Fund. The Myrtle Ellis fund has been around for nine years and here, one of the sisters behind setting it up, Susie Shaw – tells us how it all came about the creation of the new fund.
I started working for The National Brain Appeal as a fundraising coordinator at a busy time for the charity in November 2015, when Christmas was in full swing.
Another year whizzes to a close and as usual, it was an ‘event’ful’ one. More people than ever took part in challenges, donning pyjamas, Santa suits or running gear in the name of The National Brain Appeal, raising amazing amounts to fund future developments in neurology and neurosurgery.
Carolyn Nicholls learned about The National Brain Appeal after being treated at The National Hospital for a cavernoma. She contributed to our art exhibition, A Letter In Mind, after turning to painting after her illness.
Around eight years ago my mouth became very painful. I went to doctors and dentists and asked them to remove my teeth where the pain was. But nothing eased the pain and I was referred to several specialists who carried out scans on my face − one told me I had neuralgia. No one ever thought to scan my brain.