Our newsletter, now named "NewsLink" has been published continuously since 1997. All available issues are published here. Browse through them using the links at the bottom of the page, or use the "search..." box above to find items of interest.


January 2011 Newsletter

Volunteers needed!

An exciting research project at the University of Plymouth is looking for volunteers who have HSP. The project will be looking at the effect of temperature (hot and cold) on nerve and muscle function in the legs.

This will involve 2 visits to the University of Plymouth where we will be cooling or warming your lower legs and looking at some measurements of how this affects your nerve and muscle function. Each visit needs to be separated by 24 hours and each one will take 1-2 hours. Travel expenses will be reimbursed.

The research team (Amanda Austin, Prof. Jon Marsden and Dr Alan Hough) are aiming that the research will help us understand more about what happens to the nerves and muscles in the legs both when it is cold and hot. We hope to then look at treatments that could be used at home or by physiotherapists to manage these effects. We are hoping to start the project in March 2011.

This project has been designed in partnership with members of the HSP support group and is funded by the Chartered Society of Physiotherapy charitable trust.

If you would like to receive an information pack and are interested in taking part please contact Amanda Austin at This email address is being protected from spambots. You need JavaScript enabled to view it. or call her on 01752 587995


October 2010 Newsletter

I was born into a family of keen walkers so at every opportunity I was taken for walks in the countryside even completing 18 miles on the Isle of Skye and climbing Snowdon. My condition was not identified so the emphasis was not to accept my condition. I started cycling at the age of 12. It was natural for me to adopt this form of transport and extend my normal day’s ride to about 70 miles. The freedom and normality cycling offered was wonderful. I joined the local YHA group and few fit cyclists could catch up with me in a sprint. I climbed Ben Nevis in my early twenties. The problems I had were identified by my observers rather than myself. I had had an achilles tendon lengthening operation at 13 and toe release more recently to prevent them curling up.

It was not until a few years after my son was born that our condition was identified but I retained my outdoor activities and even though walking has become more difficult have recently taken up canoeing. I would like to open discussion as to whether intense exercise offsets this condition. In the extreme for instance, what would be the effect on an unidentified sufferer who started to take ballet lessons at the age of five? Canoeing, cycling and swimming are pursuits that I have followed, resulting in a level of fitness well above average for my age.