Next weekend is going to be a busy one.
On Sat 24th June is the UK HSP Support Group AGM http://www.hspgroup.org/index.php/meetings/68-agm-leamington-spa, however this is the first year in 4 that I wont be going. Instead, I'm off to the Spatax networks HSP and Ataxia conference in Paris https://spatax.wordpress.com/2015/07/20/next-international-meeting-on-spastic-paraparesis-and-ataxias-june-23-25-2016-paris/, to represent the HSP support group.
This is a combination of several things, my employer, Atkins, offers 2 voluntary days per employee per financial year, and so they are paying for my time to be there. The HSP support group is covering my conference, travel and accommodation costs. I'll simply be reporting back on what I find out.
I looked at the programme for the conference, and they were accepting abstracts for poster sessions. I put an abstract together covering my three on-line surveys which was accepted. So, for the last week or so I've been busy pulling together a poster which summarises the results of the surveys, which will be up for the worlds leading HSP researchers to have a look at.
I'll share the poster here when it is finished!
20th June Update - link to finished poster https://drive.google.com/file/d/0BzEoTkR5HCWhNzllZWZWR05qWk0/view
Note. Some browsers dont seem to like this file, but you should be able to download and view in acrobat v8 or v9.
A larger but more compatible file is here: https://drive.google.com/file/d/0BzEoTkR5HCWhTklWZFNDWGlSYlU/view
If that wasn't enough, there is also a findacure event "How Rare Disease Patient Groups Can Work With Researchers" in the afternoon in London https://www.eventbrite.co.uk/e/how-rare-disease-patient-groups-can-work-with-researchers-workshop-tickets-25054044321
So, thats three interesting and relevant meetings which could be gone to - obviously I've very excited to be going to Paris, sharing my findings and finding out about what else is happening in the world of HSP. I'm hoping to be able to tweet from the conference.
If any readers have any topics they particularly want me to find out about, then post a comment, and I'll do my best to find out.
Adam, I just stumbled upon your blog from Facebook and there is a wealth of info there including this very interesting HSP On-Line Survey Results. I am a HSP patient (SPG4, diagnosed just over 2 years ago) and I'm 57 and have been active all my life in sports (grew up in Canada so hockey for sure) and I'm also a musician and professional photographer. Of course now I need to contend with the limitations physically but I'm not going down without a fight. Not sure if you have seen this video from Montreal but I was sharing with the HSP Facebook and community here. Dr. Guy Rouleau and his team have identified the mutant gene that causes HSP and this will hopefully open up a few doors. Of course I don't know the science but I thought I'd share the video so you can see. https://www.youtube.com/watch?v=4toda3jl1Ag
ReplyDeleteApologies to readers in the US - it's your meeting as well this weekend. Should have made this a four meetings post!
ReplyDelete