Sunday, 9 August 2015

AGM2015: Potato Pants - Ian Bennett

The last part of the AGM was from Ian Bennett, who had been to an HSP meeting in Madrid. There were representatives from 9 HSP groups there, 7 from Europe as well as from Australia and the USA (and apologies from 2 more European groups). The meeing was at the Euro-HSP GA and AGM. You can read about the meeting here:

The meeting was talking about the various HSP groups joining forces and being able to form international groups, effectively enabling an international research alliance. Readers who are members of HSP support groups who wish to be considered for research programmes should make their group aware of this (whenever these have been discussed before, people would find out the details of the trial and be able to make a decision whether to participate or not. If you're not on the list then you wont be asked.....)

From the record of the meeting I copy-and-paste the part about setting priorities for the groups moving forward collaboratively/together:

Setting Priorities- the leader from each group nominated what they believe to be the most important mutual priorities emerging from the meeting. The most commonly mentioned priorities are:
  • supporting the development the global HSP registry with a view to successfully staging phase III clinical trials in the future
  • developing a common symbol/logo for HSP globally, that will signify alignment and collaboration between national support groups, and help present a unified face to external key stakeholders such as clinicians, researchers, regulators, relevant government and non-government bodies, the pharmaceutical industry, the global HSP community, and to the public at large
  • investigating taking on a new and different role in attracting funding.

These seem like a really good set of priorities!

The other part of the meeting which Ian talked about was the Potato Pants campaign....

You can see here a video of Lori Renna Linton describing how HSP has affected her, and how she described to her daughter that trying to walk with HSP is like having 10kg of potatoes on her legs. This was something which had to be tried at home, and after that a school set the challenge....

You can see the event in the school (in Austria) here where the runners have special "potato trousers". They then chose to issue the challenge to two other schools....

When I watch the video of the event I can see that there are indeed some similarities between these runners and how I see people move with HSP, so actually the 10kg of spuds (=potatoes) is a good description.

Why was this discussed at the meeting? - Firstly the event at the school raised 6000 euro for HSP, which is a great amount, and the nominations out to other schools is like the ALS ice bucket challenge from last summer. The questions are: Could potato pants be a global symbol for HSP? - and following that can we make this into an awareness/fund raising challenge like the ice bucket challenge?

Its a couple of months now since the UK AGM and I'm kind of drawn also to the idea that this could also be an educational thing as well. Like in ante-natal classes they sometimes get the dads to strap on a false tummy with (the equivalent weight of) a fully developed baby etc. inside. Could this be a STEM style activity?

I need to put the how could we fund raise from this into some more thought - its very easy and video friendly to get a bucket of iced water thrown at you, but more of a challenge to get some extra weight in your trousers and show. Thinking caps on.....................

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