Blog posts
A new journal article by Gusset et al., 2020 called A Decision for Life – Treatment decisions in newly diagnosed families with spinal muscular atrophy (SMA) has been published.
This week we had another amazing webinar with Marion, this week focusing waking up some of the weakest muscles either with or without treatment. It's easy to think that because you are so weak you now can't do anything with…
We have received some advice from Professor Francesco Muntoni, Professor Ros Quinlivan, Dr Adnan Manzur and Dr Chiara Marini-Bettolo who are four neuromuscular experts leading the paediatric and adult North Star and SMA Reach networks of neuromuscular health professionals in regards to COVID-19 vaccinations.
TreatSMA is sharing the wonderful registered Changing Places toilet map link.
In this session Marion talks about the different assessment and why they are important not just for professionals but also for yourselves to measure progress especially with treatments.
TreatSMA has launched a new Facebook group called TreatSMA Community’s Physio and Exercise Ideas and Tips
In this session we look at all of the different exercises that can be done to help build muscles particularly in the upper body as more people are starting to receive treatment. Really good session, it's amazing what you can…
Dear community We understand there are some difficulties for children with SMA around getting support to shield, therefore alongside community member Irvana, we have written this letter to send to the CEOs of hospitals. Please do let us know your…