Helpline: phone0300 0110 122 | Online Community

Improving our support to you – our vital volunteers

Volunteers are the lifeblood of PSPA. It is directly because of your dedication and commitment we are able to push forward our work delivering vital local support, educating healthcare professionals, and providing information and support to people affected by PSP & CBD.

Our volunteers are a key part of PSPA’s ambitions to achieve even more for people living with PSP & CBD over the next three years. One of our strategic goals is to grow our capacity to support more people affected by PSP & CBD and fund more research. In order to do this, we have restructured PSPA central functions.

The Volunteering, Information & Support and Helpline functions have been merged into one Engagement Team under the leadership of Carol Amirghiasvand, who has been promoted to the role of Director of Engagement.

Carol’s new role will be responsible for improving our engagement with volunteers and the wider membership. Carol will also focus on recruiting more volunteers to increase and strengthen our PSP & CBD community. Gemma O’Connor, Engagement Officer, will be supporting Carol on our ambitious volunteer recruitment drive.

Debbie Benadie will now focus on supporting staff as Office Manager, whilst developing our customer relationship management system to improve communication with our membership.

Our Local Groups will now be supported by the Helpline Team, headed up by Jules Brown who has been appointed to the role of Helpline Team Leader. Jules will be working closely with our Helpline Care Navigators to improve how we support Local Groups.

The Helpline Team will also be supporting Carol in the production of information and support materials and organising our Family & Friends and Study Days.

The aim of this restructure is to help build solid foundations in order to provide you, our valued volunteers, and our wider membership, with increased support and improved communication.

The changes come into effect on 1 March. Naturally, there will be a period of adjustment, but we hope these developments will enable PSPA centrally to better support you. If you have any questions, please contact our Helpline on 0300 0110 122 or

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