Summary
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Research Unravelled: Chronic pain in spinal muscular atrophy (SMA)
Would you believe that chronic pain in neuromuscular disorders is rarely talked about? This seems counterintuitive for a set of conditions which all feature pain as a symptom. However, Steiner et al. in a large…
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Research Unravelled: Sleep disorders in neuromuscular diseases
We can never have enough sleep! Although some of us might burn the midnight oil because of the demands of daily life, sleep isn’t just for helping us feel rested: it actually repairs our bodies.…
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Research Unravelled by Pathfinders Series #1:
Reviewing social care for adults with neuromuscular conditions. Overview: When it comes to support, it’s medical needs first, then social care afterwards. At least, that’s the message often received by those who attempt to interact…
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Social Care Campaign: Pathfinders Blog Post
The Social Care Campaign. Why now? To illustrate why we have launched our social care campaign, we asked various members of our community to share their experiences of social care. First, Sam, our Research and…
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Self-Reliant Independency with DMD in Japan
When it comes to discussing muscle-weakening conditions, it’s easy to only think about local impact, such as accommodations available in your town, city, or country. But individuals with muscle-weakening conditions exist all across the world,…
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My Life with Ventilation: A Cripping Breath and Pathfinders Event
In popular culture, ventilation—or having air provided to your lungs with support from a machine—gets a bad rap. In movies and TV shows ventilation is often shown as a last-resort option for those who are…