Newslink

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.


 

March 2017 - Michelle’s 1,000 Mile Marathon for HSP

I’ve taken on a challenge – to walk 1000 miles in 365 days!

MichelleLast year both my husband (Neil) and son (Finnegan) were diagnosed with Hereditary Spastic Paraplegia (SPG4). While other members of my husband’s family have it, it still came as a shock to us; given Neil had always been active, enjoying cycling regularly and playing rugby twice a week throughout his teens and early 20’s.

No one had really understood HSP, how it affected them and how it was passed on through generations. So it was never explained to Neil that he had the potential of being a carrier of the gene, and even develop the condition at some point. Neil had his genetic test done first and it took longer than expected for the results to come back, his bloods were taken in December 2015, and he eventually received the results in June 2016. Although we had accepted they would come back to confirm HSP we still had to wait before we would be able to send off for Finnegan’s DNA to be tested. The results for him came back much quicker and unfortunately confirmed what we already suspected; he too has HSP.

By this time we’d had some time to look into HSP and get a better understanding of the effects. Both Neil and Finnegan had great support through physio, occupational therapy etc and the support from Neil’s employer and Finnegan’s nursery has been amazing. Neil has changed from a very active role where he was on his feet all day to an office based job which has meant a lot of training and learning a new role but means it gives him the option to work from home when needed.

As a wife and mother who would do anything I could to help them, I started to feel helpless. There’s nothing that I can do to make them better. At the beginning of January, I started to see stories related to the walk 1000 miles challenge. I’ve always struggled with my weight and fitness, even more so in recent years. The emotion of finding out about Neil and Finnegan having HSP made me eat – a lot! I made a decision there and then that if the mobility of Neil and Finnegan could potentially deteriorate, I needed to be there for them, fitter and stronger than I am now.

So I decided to take part in the challenge, to get my fitness back, for me and for them. While out on my first walk Neil and I were talking and I suddenly had the idea that I could do this and raise money for, and raise the awareness of HSP. So now, I’m out walking nearly every day to count up the miles and to make sure more and more people are aware of HSP.

Download full newsletter

 

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.

Download full newsletter