Pathfinders Neuromuscular Alliance is a user led charity, run entirely for and by people with muscle-weakening conditions. We provide social and support services, a range of information guides, events and outreach, and campaign on issues that matter to adults living with muscle-weakening conditions.
Find out more about:
Who We Support
Pathfinders Neuromuscular Alliance aims to improve the quality of life of teenagers and adults with Muscular Dystrophy and related conditions.
So what does “related conditions” mean in practice?
Membership of Pathfinders (and the Pathfinders Facebook Group) is open to people diagnosed with a muscle-weakening condition or where one’s medical team suspects that this is the case. We focus on conditions where muscle-weakness is one of the primary, most significant symptoms. This includes all the muscular dystrophies, and conditions such as mitochondrial myopathies, and we also include Spinal Muscular Atrophy and Motor Neurone Disease.
Pathfinders is a condition-specific organisation because we find that people with health conditions gain most benefit from advice and information by and for people with broadly similar needs to themselves. It allows us to target our work rather than trying to cover every condition.
We do not include conditions such as Cerebral Palsy, Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Multiple Sclerosis, Ehlers-Danlos Syndrome, channelopathies such as Cystic Fibrosis or Periodic Paralysis, Fibromyalgia, Polio or Post-Polio Syndrome, or any other condition where muscle weakness is only a small part of a much bigger list of symptoms. If you are not sure whether this includes you, or you are worried that you might have a primary muscle-weakening condition but are not clinically suspected to have one at the moment, please contact us to discuss your membership.
Advocacy and Support
We provide advice and advocacy for adults with neuromuscular conditions and their families. We work with individuals to identify what they want to achieve and help them to access existing services or work to secure new provision when necessary. Using our lived experience we can advise on a wide range of issues from accessing air travel to going to university or securing a care package. Adults are encouraged to contact us directly to access the service.
Pathfinders Neuromuscular Alliance is a user-led charity (reg no.1155884) which promotes choice, control and quality of life for teenagers and adults with neuromuscular conditions in the UK. It campaigns for improved standards of health and social care and provides advice, guidance and support to teenagers and adults with neuromuscular disorders (NMD) on issues such as independent living, housing, employment and welfare rights.
- To provide a voice for adults with neuromuscular conditions.
- To provide a forum for adults with neuromuscular conditions to share experiences, ideas and opinions in complete confidence.
- To provide information, advice and peer support to adults with neuromuscular conditions.
- To identify, promote, and develop best practice, innovative treatments and technologies for adults with neuromuscular conditions.
- To campaign and influence treatments for adults with neuromuscular conditions with health and local authorities, government, relevant professionals, disability organisations and charities.
- To work with health and local authorities, government, disability organisations and charities to improve care, support and services for adults with neuromuscular conditions.
- To increase awareness of adults with neuromuscular conditions.
As an organisation, Pathfinders always tries to be as transparent as possible about what we do, and who we benefit.
Governance coming soon.