Just James on Radio Lancashire

UPDATE:  Here is the link to BBC Radio Lancashire and Brett Davison’s show.  I am on at 24 minutes, and again at 1 hour 20 minutes.  If you are outside of the UK you won’t be able to access it, sorry!

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Hi everybody

I am going to be on Radio Lancashire on 13 June, at 16:20 and 17:25 talking about chromosome 18 disorders, nystagmus, and my run across Hadrian’s Wall to raise awareness and funds. you can listen live to the programme (Brett Davison’s drivetime show) here

I’m sure it will be on iPlayer too afterwards for a week or so, when I get the link I’ll post that too.

It’s great to know that my run across England is doing it’s job – raising awareness or James’ conditions, our charities, and raising much needed funds. I’m so pleased!

Mark

Mark is running across Hadrian’s Wall….

So, it’s not long until Mark undertakes the challenge of his life and runs across Hadrian’s Wall for Just James, supporting the Nystagmus Network and the Chromosome 18 Registry and Research Society (Eurpoe).

As well as raising much needed funds for the charities, Mark is also trying to raise as much awareness as possible.  Mark has recently featured in the Chorley Guardian, raising the profile of abnormalities of the 18th chromosome, and nystagmus.  Have a look below

Later this week, he will also be featuring on Radio Lancashire’s drivetime show with Brett Davision.  As soon as the interview goes live, we’ll put a link to the show here on the blog.

So the plan is slowly coming together.  Nearly £1000 has been raised so far, nystagmus and Chromo18 is getting much needed oxygen in the media, and Mark is all bnut ready to take on Hadrian’s Wall.  All 69 miles of it.

 

If you would like to sponsor Mark, please see his Virgin Money Giving site here.

Auction for Nystagmus Network!

UPDATE

Steven will now match the winning bid pound for pound!

Bidding is simple:

1. Tweet Steven your genuine bid.
2. The auction closes at 8pm 7 Feb. Shortly after, Steven will follow & DM the winner.
3. You’ll change lives.

It couldn’t be simpler, good luck!

Please play fair and bid honestly, there has been some hoax bids, which isn’t big, and isn’t clever!

Steven Reid with his Millwall shirt ready for auction.

Like most people, Steven Reid (Millwall, Blackburn Rovers, QPR, West Bromwich Albion and Rep of Ireland footballer) didn’t know about Nystagmus until it affected his family – Steven’s son has Nystagmus.  After coming to terms with the diagnosis, Steven sought out the Nystagmus Network, and yet again the charity came up trumps with information and support.  Steven has attended a couple of open days and he and his family are now much better equipped to support their little man as he grows and learns not only to live, but to thrive, with Nystagmus.

Like many others, Steven wants to give something back to the charity that has helped him out so much.

Steven is auctioning one of his Millwall FC shirts, with the money raised going straight to the Nystagmus Network to help them continue the good work they do.  If you want to bid for the shirt, all you have to do is contact him by Twitter (either an’@’ reply or a DM) with your bid.  The highest bid wins.  Simples!

The auction ends 8pm Tuesday 7 February, so if you want the chance to win it, you don’t have long to be in it.

Bits of news

Hi everyone.  Hope you are all well and that your children are continuing to be the little stars we know they all are.  A few little bits to bring you so excuse the bittiness of this post!

Facebook Group

Alongside the Facebook page, we have now created a group to for you to join.  Hopefully the group will grow into a place where we can all share our stories, requests, our moans and our successes with our children.  As with all things, we only get out what we put in so please join the group, say hello and start the conversation!

Chromosome 18 Charity Evening

Cheryl is still looking for crackers for the charity evening on 16 december, and I’m sure she’d happily accept any other decorations you’d like to donate for the evening.  the plan is simple – keep the costs down and raise as much money as possible.  Please get in touch with Cheryl if you have anything to share, either via Facebook or twitter (@Ring18Syndrome).  Talking of fundraising…

Kirky’s Progress

I am deep into my winter training plan with my running – the end result being a run across Hadrian’s Wall next June.  I have just completed a race which was 8.45 miles and hilly as you like, even the start line was on a hill!  I am a quarter way to my target, but hopefully I’ll smash £1000 easily and just make as much money as I can for the Nystagmus Network and the Chromosome 18 Registry and Research Society

Ever wondered what Nystagmus looks like?

Hi everybody

Have you ever wondered what Nystagmus looks like?  If you haven’t ever seen somebody with Nystagmus before, have a look at this old blog post from our other site Kirky’s Progress.