Pathfinders Neuromuscular life

Blogs, News and Features from the Neuromuscular Community

Trustee Board: Recruiting for condition-specific representatives

Lucy Watts with assistance dog Molly
Lucy Watts, one of the current Chairs of Trustees, with her assistance dog Molly

Since we became Pathfinders Neuromuscular Alliance, we’ve thought a lot about how to ensure that our trustee board brings the skills and experience we rely on, while also representing as many of our members as possible. We already have an excellent board of trustees, but as a charity representing the wider community of people with muscle-weakening conditions, we want to ensure that people across the neuromuscular community are represented on our trustee board.

We are currently recruiting for condition-specific representatives, to sit on our trustee board. These roles are for people who have a condition themselves, and a special interest in, and knowledge of, the needs and priorities of people with that condition.

Being a trustee is both a responsibility and a privilege. As one of our trustees, you would set the organisational direction for Pathfinders, leading our management, and overseeing our finances. Whether you’re a ‘big vision’ or a ‘small detail’ person, if you care about the neuromuscular community and Pathfinders’ mission of ‘promoting choice, control, and quality of life for teenagers and adults with neuromuscular conditions’, you’re perfect for the role.

The condition-specific representative roles are only open to people with that condition. In these roles, you would be responsible for being aware of the issues relevant to that community – media, treatment and trials, trends, campaigns, and issues of interest, and for bringing them to the attention of Pathfinders. You might be a link between us and other groups or charities, and you might run condition-specific events.

These representatives are:

  • Duchenne Muscular Dystrophy representative
  • Spinal Muscular Atrophy representative
  • Congenital Muscular Dystrophy representative
  • Limb-Girdle Muscular Dystrophy representative
  • Motor Neurone Disease representative

We also have two roles representing the needs and priorities of people with rare muscle-weakening conditions and those not listed above

  • Rare and unspecified condition representative x2

Finally, we are also recruiting to open places on the trustee board for anyone with a primary muscle-weakening condition.

The Trustee Board meets virtually every three months, usually on a Saturday afternoon, and is in regular contact via WhatsApp. There is also a management committee formed of volunteers from the Trustee Board that meets monthly (1pm alternating between Monday and Friday) via Zoom.


To apply to join our trustee board please fill in this form. If you would prefer to apply by email or post, or if you have any questions please email jamie@pathfinders.org.uk.

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