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 primary muscle-weakening condition (a condition where the main effect is muscle-weakening, rather than this happening as a result of another aspect of the condition), or where one’s medical team suspects that this is the case. 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, or any other condition where muscle weakness is the result of something else. 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.