The familial frontotemporal dementia (fFTD) support group is for families affected by the rare autosomal dominantly inherited frontotemporal dementia, which runs in families and is caused by mutations in the tau, progranulin or C9ORF72 genes.
Being at risk of a disease which causes any kind of cognitive impairment raises all sorts of issues and concerns. There is often a sense of isolation when faced with these issues and few facilities are appropriate to this group’s specific need. The group is run through the National Hospital for Neurology and Neurosurgery. It currently holds a national meeting once a year in London. At this meeting, the group offers information, advice and social opportunities for people with fFTD and their families. A newsletter is also published and circulated to members between meetings. For more information please contact Jill Walton.