Jon, CEO presenting to a room

Frequently Asked Questions


When was Pathfinders founded?

Pathfinders was founded in 2014 as DMD Pathfinders, run by and for people with Duchenne Muscular Dystrophy. In 2020, it decided to expand its remit to support people with neuromuscular conditions more broadly.

Who is Pathfinders for?

Pathfinders is for adults living with primary muscle-weakening neuromuscular conditions. For more information see “who we support”. 

If you have another disability and are looking for a group, Trailblazers is a group for disabled young adults, as is Scope.

What does Pathfinders do?

Pathfinders is a user led charity which aims to improve the quality of life of teenagers and adults with neuromuscular conditions. We are an information, advocacy and social hub. We offer information, advice and regular social opportunities both online and off-line for adults with neuromuscular conditions, and advocate and campaign on issues from personal health budgets to cervical smears. For more information see our website, or if you want to get involved in our campaigning visit our Facebook group.

How can Pathfinders support me?

We operate a large and active peer support network through our Facebook group, which is available to all. We also have development workers employed to provide support to our membership, so if you need one-to-one advice or guidance, just get in touch with one of them through our website. If you need help with building skills or preparing for university or work we have lots of experience placements you could try out within the organisation. Get in touch on our website.

How can I support Pathfinders?

Pathfinders is always looking for volunteers. Whether you’re interested in graphic design, running social groups, monitoring Facebook, or writing for a website, we would love to hear from you. We are also always looking for people to volunteer to help as fundraisers, as we are a small charity with a large remit.

How can I get in touch with you?

You can join as a member of Pathfinders, or you can get in touch with us using the contact form here

Who are you governed by?

Pathfinders is led and governed by people with neuromuscular conditions. To see who’s involved, visit our Meet The Team page

How do you choose your campaigns?

Our campaigns are chosen and led by our members. If you’re interested in becoming a member, please consider joining Pathfinders officially. We have a busy Facebook group for people with primary muscle-weakening (neuromuscular) conditions, and a sister group for parents, friends, and relatives.

How can I fundraise for you?

As a charity, Pathfinders is reliant on fundraising – and we’d be delighted to have your help. If you want to fundraise for us, you can find more information on our fundraising page or get in touch with us directly on info@pathfindersalliance.org.uk to discuss your idea.

Where can I find more information?

Continue to browse our website, or if you have any questions, just email us on info@pathfindersalliance.org.uk