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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.


 

February 2018 - Lily Rice – Flipping Awesome!!

Lily RiceHi, I’m Lily Rice, I've just turned 14 years old, I live in Pembrokeshire and I have HSP, but more importantly I am the only girl riding WCMX (wheel chair motor cross) in the UK. WCMX is a mix of BMX and Skateboarding and is practiced at skateparks. It is a relatively new sport, especially in the UK. In the last few years my condition has progressed whereby I now rely on a wheelchair. I’ve never let my condition hold me back or stop me from trying to achieve my goals.

I had the privilege of meeting the current world champion Aaron “Wheelz” Fotheringham at Nitro Circus in 2016. We stayed in touch and he donated his old wheelchair to me in February 2017. Since then I’ve been unstoppable.

My journey through 2017 has been incredible. It started in June with a demonstration in front of hundreds at my local skate park and I had an amazing response from the crowd. In July I performed another demonstration at the National Action Sports Show, this time in front of thousands, to raise the profile of WCMX. I had amazing feedback from the organisers, competitors and spectators alike. I dropped a 10ft vertical ramp for the first time which was epic!

In early September Unilad contacted me to film a mini documentary on WCMX after seeing my video edits on my social media. I became the first person in the UK, first female in Europe and second female in the World to successfully land a back flip on a wheelchair. To date it’s had over 2 million views online. The video of this went viral / worldwide and was featured on various BBC channels, ESPN American, Lightworkers and Buzzfeed.

I entered a memorial competition in Cardiff and came 3rd in the under 16’s against able bodied people. As a result of my back flip I've worked with a number of TV production companies, played the part of a WCMXer in a children’s TV drama and featured on Newsround. In November I filmed a music video with Tom Fletcher (McFly) for Christmas. The song and video had a powerful message about someone with a disability striving to achieve their goals.

In November I also received the Radio Pembrokeshire Young Inspirational Person award in recognition of what I have achieved. Before Christmas I was invited to participate at a high level free sports demonstration for Toyota in Copenhagen. The International Olympic and Paralympic Committee were present as part of a project with the aims of including WCMX into the games.

I’m currently involved in working with schools and disability groups in England and Wales to talk about WCMX and encouraging others to have a positive outlook. In April I will be the first person ever to represent Great Britain at the World Championships in California and I hope to compete in the Paralympics one day. I would like to travel the world demonstrating WCMX and inspiring others to show that having a disability, or using a wheelchair doesn’t have to be life limiting. You can do anything that you put your mind to, you just have to adapt and do it differently.

You can follow my journey on my social media; Facebook and Twitter Lily Rice WCMX and Instagram @hsp.me. Lily Rice

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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

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