The charity PSPA held an event in Leeds last week to bring together families affected by two rare brain conditions for support.

The event took place on Saturday 15 June 2024 at the Village Hotel Leeds South and welcomed more than 60 individuals and families affected by progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD).

At the event, attendees heard updates from the charity as well as information from healthcare professionals working in the field. In addition, attendees had the opportunity to take part in a seated dance class with the English National Ballet and build connections with each other.

The event was hosted by PSPA, the only UK charity dedicated to supporting families affected by PSP and CBD, rare neurodegenerative conditions that over time cause problems with balance, mobility, speech, swallowing and cognition. Currently there is no treatment and no cure available.

Because PSP and CBD are rare conditions, affected families can be left feeling isolated, fearful and overwhelmed. As well as providing regional support groups, PSPA also hosts two Family and Friends Day events in the UK each year to help bring families together for support and information.

Carol Amirghiasvand, PSPA director of service improvement and development, said: “Our surveys of people living with PSP and CBD have shown that more than 90% had not heard of PSP or CBD before their diagnosis. Families are left feeling isolated and regularly needing to explain what the conditions are and what support they need.

“As part of our commitment to improving the lives of everyone affected by PSP and CBD, we provide as many opportunities to bring families together as possible, for mutual support and to swap experiences and information about local services. To do this, we work with volunteers to run regional support groups, and also host Family and Friends days on an annual basis.

“We were pleased to welcome more than 60 people to our Family and Friends event in Leeds, who enjoyed the chance to meet others living similar experiences as well as be updated about PSPA work and how healthcare professionals can help. We look forward to running a similar event in Bristol on 21 September.”

Learn more about PSPA and the support the charity provides across the UK at pspassociation.org.uk

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