New runs for 2021...

As lockdown eases it looks like competitive running is back on in 2021! Ollie and I have decided to give Race The Train a second go. So on July 25th 2021 we will line up next to the platform at Bury station and wait for the train's whistle to start us off, 11 miles off road to once again attempt to beat the train to Rawtenstall. Wish us both luck!

Our story....

Starting back in 2019, I decided to run a series of races with my family and friends to raise money and awareness for the FPWR UK because my son Hugh has Prader-Willi Syndrome.

Starting with the Greater Manchester Marathon on 7th April 2019. My sister Kim is ran the full marathon and Phil and myself ran half a marathon each as a relay.

Next up was the Manchester Half Marathon on the 19th May which I got a new half marathon p.b. 

Then it was our first attempt at Race the Train on 23rd June. This is a 11 mile on and off road race against a steam train on the East Lancashire Railway. The whole gang of Kim, Phil, Ollie and Kathryn tackling this up hill killer! The race nearly killed me off, it was a scorcher. Poor Kat was injured and Ollie was the hero of the day carrying her over the finish line.

After this it was the Manchester Wiggle Half Marathon in October where I am hoped to break 1 hour 40 minutes for the first time. Unfortunately I was injured so couldn't run but Ollie smashed his personal best in horrible wet and windy conditions.

Over the 2020 Easter holiday I decided to use my 1 hour exercise time during Covid-19 lockdown and challenged myself to run 10km a day for 7 consecutive days, so 70km in just one week. That was tough but very rewarding, it felt so good to get out of the house and away from work and the computer.

So why are we raising money?

Prader-Willi Syndrome (or PWS) is a complex genetic syndrome which is 60 times more rare than Downs Syndrome. It is thought to affect less than 1 in 15,000 births, wow 1 in 15,000!

Hugh by random chance has two of him Mum's chromosome 15.

Now Prader-Willi Syndrome can cause some of the following:
Hypotonia (decreased muscle tone)
Hypogonadism (lack of hormones)
Short stature
Delay in and difficulties with emotional and social development
Developmental delay and learning disabilities 
Challenging behaviour
Autistic Spectrum Disorder

If that wasn't enough Hugh will suffer from Hyperphagia (excessive hunger and inability to feel full). This is the part of PWS which we fear the most. Hugh is likely to start food seeking between 3-5 years old and as a result will probably never be able to live a truly independent life. Just stop for a second and imagine always feeling hungry and it never ever going away.

PWS is not curable, it never will be. You can not simply correct someones genes. But PWS has become more manageable, in part is due to the amazing work of the FPWR (Foundation for Prader-Willi Research). If we can just find a suppressant for the excessive hunger think of the difference it would make to people like Hugh.

So please take a few minutes to read about PWS as awareness is just as important as your donations (www.fpwr.org/gb and  www.pwsa.co.uk), but please if you do want to give us a wedding gift we would prefer a donation to the FPWR UK. Every penny counts and every penny will go to supporting research in to managing the long list of conditions faced by people with PWS like our boy, our amazing Hugh.

Thank you

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