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.


 

October 2017 - Jo and Abi run the Leicester 10K

Jo and AbiAbi and I have run together for around two years, and enjoy taking part in organised runs to give us a goal to work towards and motivation from knowing that we're raising money for charity in the process. Last year we ran Birmingham 10k to raise money for Macmillan, who cared for Abi's Grandad, and this year we were pleased to use the Leicester 10k as a reason to ask our friends to donate to the HSP Support Group.

The HSP Support Group has been a huge help to my Mum, who has HSP. It's offered her, and us, opportunities to learn about the condition and to meet other people in similar situations.  As a rare condition I'm pleased to have been able to talk about it and raise awareness of both what the illness is and the great work that the HSP Support Group does.

With Abi having recently moved to Leicester and me living in Birmingham, we often trained solo but have been checking in with one another's progress.  Having run a few 10k's before, we knew we could achieve the distance, so we were focused on doing it in a good time.  I was very pleased to have shaved a couple of minutes off my personal best and ran in 53 minutes 21 seconds, making me the 66th woman across the line!  Abi ran it in 58 minutes 32 seconds, and felt that she left it a bit too late to let out her final burst of energy, but ran close to her best time too.

We're so pleased to have raised so much for HSP Support group, and that it will be used to fund research and support those living with the condition.  The current fundraising total stands at £645, and our fundraising page will remain open for the next few weeks, for any extra donations

Download full newsletter

 

 

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