Friday, 27 June 2014

HSP Support Group 2014 AGM

Last weekend I went to the UK HSP Support Group AGM.

The first part of the day was the AGM of the group, with good reports - the membership of the group is up, and the number of honorary members is also up - medical professionals who work with HSP are frequently made honorary members, and the number of members of the facebook group is up.

There have been more meetings in more places than the previous year, which is good as it means members are sharing their experiences more.

A new feature is that if members wish to take part in medial research, then this can be stored with the group, allowing researchers to approach group members to see if they would like to take part in studies.

During the day there were four presentations, which I will go into further details in subsequent posts (like I did last year). In summary:

The team at Plymouth University presented an overview of their work, research that they are currently undertaking, and research they would like to undertake. Prof Jon Marsden, Amanda Denton and Kate Winstone covered these areas between them, over two presentation 'slots'.

Dr Evan Reid of Cambridge University gave an overview of research in HSP and gave everyone an insight into what happens with HSP at the cellular level.

David Heard of Sportability gave us an introduction to the types of sports that his charity allows people with paralysis to have a go with, and the positive results which they achieve.

As last year, it was good mix of friendly people, and everyone used the breaks between presentations to chat to old friends and get to know new people. The event was well organised and well attended, and I enjoyed talking with people. As I observed last year, there are people with a wide range of mobility and a wide range of mobility aids, and it is a good reminder that whilst HSP is a rare disease, it really is ~70 different rare diseases grouped together.

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