The Myrtle Ellis Fund has now merged with another rare dementia support fund and is called: Rare Dementia Support.

Donations can be made to the campaign page on The National Brain Appeal's area of JustGiving and you can link your own fundraising pages to it.

Please go to bit.ly/RDSfund.

Thank you for your support.
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Our mother, Myrtle Ellis was diagnosed with PCA relatively late - she was 68. As a result of her being referred to the National Hospital's Dementia Research Centre for a drug trial, my sister Susie Shaw raised £9,500 which we ring-fenced within the National Brain Appeal to provide a PCA patient and carer support group.

The group grew and in addition to PCA, the MEF now supports groups for these rare dementias: Primary Progressive Asphasia (PPA), familial fronto-temporal dementia (fFTD) and Familial Alzheimer's (FAD).

It costs around £20,000 per year to run 11 London and 10 regional meetings a year, a part-time support nurse co-ordinator and all associated expenses such as catering, marketing and venue hire.

About 500 people (UK and overseas) are currently on support group databases receiving emails and newsletters with around 700 attendees across all the meetings. In addition, travel and accommodation bursaries are available to help patients and carers attend the meetings.