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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.


 

September 2016 - 1st Potato Pants Festival a success!

On June 4th following many a sleepless night after months of planning, the first Potato Pants Festival was held in East Dorset. It took place at a small community farm called High Mead Farm and all profits were to be split equally between the farm and HSP. The farm provides opportunities for people with learning and physical disabilities, mental health issues and for disengaged youngsters.

We kicked off at 10am with the first of eight musical acts. There was at least a 30 minute interval between each musical performance and this time was used for people to get involved in the potato pants races. Several pairs of special trousers had previously been made that could easily be worn on top of clothing. Ten kilograms of potatoes were inserted within these trousers and many people took part in races. The idea of this of course, was to give members of the public an idea of what it may be like to have early stage HSP. It was amazing how people loved taking part in this activity, which can be clearly seen by the expressions on faces in the photo on the front. The Wimborne town crier started all the races and continually reminded people why they were doing such a crazy activity.

There were various food stands and a bar that was supplied by Wimborne’s Eight Arch Brewing Co. The children were kept entertained by a bouncy castle, coconut shy, crockery smash, face painting, not to mention the various farm animals and wheelbarrow races. Terry Duffy had a stall selling his wood carvings and all proceeds went to HSP. We borrowed a golf buggy from a local golf course and this was available to anybody struggling with mobility. The music and merriment continued until 11pm. We were very lucky to have Rachel Stroud performing in the afternoon, Rachel was a contestant on The Voice and she got as far as the knock-out stages. The entertainment concluded with the excellent local band Black Water County.

A total of 350 people attended including several members of our Group. An amazing profit of £2600 was made after settling all the bills for things like portaloos, generator hire and refreshments. Having now witnessed how much enjoyment people had, I believe that the Potato Pants racing could really take off and help make this a much bigger annual event. The name ‘Potato Pants’ is certainly very memorable and many people have insisted that I don’t change the name. Most of the feedback received has been very positive and plans are already in place for a similar but even better event next year. I’ve already been fortunate enough to have an amazing musician agree to perform next year at no expense to the Group. Roll on June 3rd.

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May 2016 - New International HSP Logo

Last June I attended a meeting in Madrid where leaders of many HSP organisations around the world were in attendance. This meeting was organised by Frank McKeown who is the president of the Australian HSP Research Foundation. It was a very interesting three days and I made new friends meeting HSP’ers from USA, Spain, France, Switzerland, Italy, Denmark, Sardinia and the Netherlands.

Research was a major topic under discussion and particularly how all of our international groups can work together to help future research. During conversations, we all agreed that it would be a good idea to have a global identity for HSP support organisations and people with HSP everywhere. It will help with public recognition and demonstrate global unity in the quest to find effective treatments for the condition.

A working group of six was formed and we held two online competitions. One was to compile a tagline and one was to design a logo. There were hundreds of entries to both competitions and the tagline ‘Taking Steps Towards a Cure’ was unanimously selected as the winner. The working group whittled the logos down to our favourite six and then members of HSP organisations globally were invited to vote for their choice.

The winning design does not replace our existing logo but will be used alongside it. It will be shown on our website and future letterheads, newsletters and flyers. You may also notice that it is already displayed on the Australian website and I’m sure it’ll become a familiar sight. Thank you to all who voted. I personally think it was an excellent idea and I’m delighted with the result.

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