Call for volunteers to launch support group for rare brain diseases in Northern Ireland

UK charity PSPA is issuing an urgent call for volunteers in Ballymena to help establish a vital new support group for families living with rare, life-limiting brain diseases.

The charity aims to set up a monthly support group in either Belfast, Armagh, or Ballymena, depending on where the volunteers can be found. This group will provide a lifeline to the many families in Northern Ireland navigating Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD).

PSP & CBD are progressive neurological conditions that affect movement, speech, and cognition. Because they are rare, families often feel isolated and "lost" in the healthcare system. There is currently no cure and no treatment to slow the progression, making peer-to-peer support an essential part of care.

"We know that for families in Northern Ireland, a diagnosis of PSP or CBD can feel incredibly lonely," says Lavonne McCormack, the Volunteer Coordinator at PSPA. "By establishing a support group, we can create a safe space for families to connect and share experiences.

“We just need a couple of passionate local individuals to help us get this group off the ground."

The Roles: Volunteer Support Group Coordinator and Support Group Helper

PSPA is looking for two volunteers to help set up this vital support group. The individuals should be organised and empathetic to help facilitate these monthly meetings.

This is a rewarding role requiring approximately four hours of support each month.

Responsibilities include:

Facilitating Meetings: Creating a welcoming and supportive environment for members.

Local Outreach: Raising awareness in local hospitals, libraries, and community hubs across the province.

Administration: Sourcing a venue, managing venue bookings, organising speakers or activities, and acting as a local point of contact.

Who Should Apply?

PSPA provides full training and ongoing guidance. The ideal candidate should be:

An empathetic listener with strong communication skills.

Reliable and passionate about building community in Northern Ireland.

Willing to learn about PSP & CBD (personal experience is a plus but not essential).

How to Get Involved

Anyone interested in helping to establish this much-needed service can visit: pspassociation.org.uk/volunteering or call Lavonne on 01327 356137.