We held our AGM today in Birmingham. It was great to see many of our members there in person. We had some great discussions about lots of different topics, both about what was being said and also in the times between the different aspects. We elected our trustees, accepted our reports and gave an update on what has been going on with the group. It was good to welcome Michael Payne, Helen Payne and Estelle Marshall to our team of trustees and meet them in person.
We are aiming to get a recording of the proceedings on-line in the next few days.
An outcome of several discussions was that we have tried to cover key points in previous AGMs. We have a lot of useful resources from these which they may find useful. Some links from relevant presentations to some of the topics chatted about today, on our YouTube channel, are:
Choosing mobility aids: https://www.youtube.com/watch?v=0MhAzE5SMCI
Falling with HSP: https://www.youtube.com/watch?v=f68yaDzYtvQ
Benefits you may be entitled to: https://www.youtube.com/watch?v=XgAImXb5YI0
Physical activity with HSP: https://www.youtube.com/watch?v=VVEi0VZdtS0
There are also other relevant resources you may want to know about:
The European Reference Network (ERN) have a patient journey which many have found useful to help them through conversations with healthcare professionals: https://www.ern-rnd.eu/patient-journey-hereditary-spastic-paraplegias-hsps/
There are set of different stretches and exercises which the German group TreatHSP have put together. By means of Google Translate (other on-line translation services are available) you can convert the pages to English, and use translated closed captions to understand the short example videos. https://www.treathsp.net/en/clinic/physiotherapy
We thank everyone for coming. It was a brilliant day, and our venue was excellent!
