Pathfinders Neuromuscular Alliance is a UK-based, user-led charity that provides information, advice, and peer support to teenagers and adults with muscle-weakening conditions such as Duchenne. Pathfinders has uniquely positioned themselves as a non-profit both for and run by people with muscle-weakening disorders. All trustees and staff have muscle-weakening conditions and are committed to sharing their experiences to create a service that can help others with similar disabilities.
Pathfinders’ mission is to ensure that adults with muscle weakening conditions can live the lives they choose. They bring people together through events and peer support groups, and campaign to improve health and care provision.
Most information resources are designed with parents in mind, focused primarily on the medical progression of DMD. As people with Duchenne continue to live longer, Pathfinders will respond to the distinct lack of information and resources on the transition from adolescence to adulthood. They are using the STRIVE funding to develop a comprehensive suite of resources which provide information and advice to young people with Duchenne who are going through this important life stage.
These resources address the questions of most interest to young people with Duchenne, covering topics such as living independently, employment, sex and relationships, travel, and technology, while also communicating vital health messages and promoting the important role of neuromuscular specialists. The STRIVE grant is allowing more young people and adults with Duchenne to get involved with Pathfinders, creating content based on their own lived experience. So far, content has been developed in a range of formats designed to be easily shared on social media – including a podcast, videos, infographics, photos and bitesize information.
Through these resources, Pathfinders aim to demonstrate the varied pathways that adults with Duchenne can take to achieve independence, thereby raising aspirations and hope among young people with Duchenne in the UK.
We believe in empowering our members by giving them the tools and support they need to achieve their own objectives, whatever these may be.