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Wednesday, 18 November 2015

Mark 2 cure

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I found the  https://mark2cure.org  website the other week, and I finally found a few minutes to give this a try. The basic premise of the s...
1 comment:
Friday, 6 November 2015

Spatax Network Map

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My first venture into online HSP mapping... I wanted to see the spread of researchers in HSP. I thought it would be reasonably straightfor...
Friday, 23 October 2015

HSP maps

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I have found 2 online maps showing the locations of people around the world with HSP. One of these I had found recently, the other I've ...
1 comment:
Thursday, 8 October 2015

update to walking and pilates

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A brief update on a couple of things: Walking: At one of the AGMs I went to someone was describing their walking technique as "heels ...
Thursday, 24 September 2015

New In-Soles - A trip to Orthotics

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Part of the process from my appointment at the HSP clinic in London last year has (almost) finished with me being given a pair of custom in-...
Friday, 11 September 2015

2015 Survey open

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Update: This 2015 survey is now closed. For details of the results of this survey and any current surveys, please see this page:  http://hs...
3 comments:
Saturday, 22 August 2015

UK Rare Disease Survey open till sept.

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I saw this rare disease survey earlier in August, and have completed it myself. Rare Disease UK ( http://www.raredisease.org.uk ) last di...
Thursday, 20 August 2015

5 Years of blogging

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I realised the other day that we're already in August (and now over half way through). My first blog post was back in June 2010, which m...
Sunday, 9 August 2015

AGM2015: Potato Pants - Ian Bennett

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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,...
Saturday, 18 July 2015

AGM2015: Insights into HSP from Drosophila - Dr Cahir O'Kane

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Dr Cahir O'Kane works at the Department of Genetics at the University of Cambridge. Dr O'Kane's talk was around the study of H...