Pompe Survey – Support for Exercise
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Some of you may remember Stephen Dando from his time as a specialist physiotherapist for Pompe at the National Hospital, London. He also helped us to produce a video on Physical Wellbeing for Pompe (ZiP 002), which you can see on our Video Library.
Stephen is a lecturer in physiotherapy at Cardiff University and we are collaborating with him on a project to determine what exercises Pompe individuals are doing, what they feel they would like to do, and what obstacles are getting in the way. He ran a similar project with the Multiple Sclerosis community and the University Hospital of Wales.
Steve really wants to take account of people’s needs and wishes, rather than imposing exercises. So, he has asked for our help to find out what people in the Pompe community want, and what barriers they meet when trying to exercise more.
Our survey is very short, it should only take about 5 minutes to complete and will provide some excellent data for Steven and his team to develop the next phase of his project to improve exercise advice for Pompe.
Please contact us if you have any questions.
Allan Muir
Chair, Pompe Support Network