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.


May 2011 - Wellington Loot!

It was Friday 30th October, the day before Halloween and my daughter Kathleen and I were driving to the HSP meeting in Devon. As we got closer, the road cut through hills on both sides of the road, making it a very scenic journey. These rolling hills escalated from either side, and trees and hedges lined much of our route. We drew closer to Ashburton and turned right at the crossroads where the Dartmoor Lodge Hotel is signposted. The sun was setting behind us when we arrived at the hotel on the southern edge of Dartmoor. The following day (Halloween) at 2pm, the Region 4 meeting was conducted at the hotel. It was at the end of this meeting that I stood up and announced my crazy idea to raise some funds for the HSP Group. I suggested that we should do a sponsored wellington boot dance at our next Devon meeting in March.

When the meeting had concluded and we were all relaxing in the hotel bar it was noted that I had a big problem at remembering people’s names, so in my head I gave them another name. While we enjoyed dinner in the hotel restaurant, one of the members asked if everyone knew their nick name I had given them. I had drank a drop of wine by this time and when I mentioned each members nick name lots of laughs were heard-the atmosphere was brilliant. At this point I knew I could trust these people, I knew I could call them my friends and we could share a laugh and joke together. It made me feel as if the bizarre way to raise money, which I had announced earlier during the meeting, would work. My idea was for members to dance for 20 minutes in wellington boots and to get friends and family to sponsor them for doing so. There were to be no rules, simply to put on wellington boots, wiggle bottoms and move arms, if necessary it could be done from a wheelchair, a seat or a mobility scooter.


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