Volunteers are at the heart of PSPA. Across the UK, they dedicate their time, compassion, and energy to supporting people affected by Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD), helping ensure that nobody faces these conditions alone.
In 2025 alone, 141 PSPA volunteers logged an incredible 1,905 volunteer hours, supporting over 500 families in countless ways, from running support groups and providing support through the evening Helpline to Befriending services, fundraising events, and education sessions.
Creating safe and supportive communities
In 2025, PSPA’s Support Groups, continued to provide invaluable spaces for families to connect, share experiences, and support one another – online and in-person.
With more than 30 in-person and online support groups currently running across the UK, volunteers help create welcoming environments where people can talk openly, exchange practical advice, and build meaningful friendships. For many attendees, these groups are not only a source of information but also an important social lifeline. A lot of people living with the condition and their carers have made lasting friendships through the Support Groups, that continue outside of them.
New support groups have also continued to grow over the past year, including groups in Bradford and Portsmouth, alongside the launch of a new online Northern Ireland Support Group. Additional groups are currently being explored in Hertfordshire, Lincolnshire, and Cambridgeshire, helping PSPA reach even more families nationwide.
Providing companionship through befriending
Another valuable volunteering role is the Befriending service. Volunteers provide companionship and emotional support to individuals and families affected by PSP & CBD through in-person visits, phone calls, and online conversations.
Currently, around 16 volunteers provide direct Befriending support, helping reduce isolation and ensuring people feel heard, understood, and connected. These volunteers often become a reassuring and familiar presence during incredibly challenging times.
Supporting families beyond the home
PSPA volunteers also play a key role in raising awareness and improving understanding of PSP & CBD within healthcare and care settings.
Education volunteers regularly deliver presentations to care homes and nursing homes, helping staff better understand the conditions, recognise symptoms, and access appropriate support. These sessions combine practical information with personal experiences, helping professionals gain deeper insight into the realities of living with PSP & CBD.
Alongside this, Helpline volunteers provide evening support from Monday to Friday, helping families access guidance and signposting when they need it most.
Helping PSPA through events and fundraising
From challenge events and awareness campaigns to community fundraising activities, volunteers continue to support PSPA in a huge variety of ways.
Many volunteers assist at fundraising events throughout the year, helping organise activities, welcome attendees, and raise essential funds for services and research. Other volunteers support behind the scenes through administrative tasks, volunteer surveys, and data analysis, all of which help strengthen PSPA’s volunteer programme and future planning.
Every contribution, no matter how large or small, helps PSPA continue its vital work.
Looking ahead
As PSPA continues to grow its volunteer network, there is still a need for more volunteers across the UK, particularly for in-person befriending and support group coordination.
Even just a few hours a week can make a meaningful difference to someone living with PSP or CBD. Whether it’s providing companionship, helping run a support group, assisting at events, or sharing lived experience, volunteers help create stronger, more connected communities for families affected by these conditions.
PSPA is incredibly grateful to every volunteer who gives their time, compassion, and support. Their dedication continues to bring comfort, connection, and hope to so many people across the country. We are excited to celebrate and thank all our volunteers during Volunteers Week with a range of events.
We are particularly looking to recruit more Befrienders across different parts of the UK to increase the support and meet the referrals we are receiving. If you, or anyone you know has experience of PSP & CBD and would like to provide support to people living with these conditions, please contact Lavonne on lavonne.mccormack@pspassociation.org.uk. Lavonne is also always keen to hear from anyone who is interested in setting up a new Support Group in their area.
PSPA is incredibly grateful to every volunteer who gives their time, compassion, and support. Their dedication continues to bring comfort, connection, and hope to so many people across the country.
Thank you to every PSPA volunteer for everything you do.
