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DEBRA – For people whose skin doesn’t work, we do

Epidermolysis Bullosa

What is EB?

Epidermolysis Bullosa (EB) is a group of genetic skin conditions which cause the skin to blister and tear at the slightest touch.

Those born with EB have skin so fragile they are called ‘butterfly children’ – their skin is quite simply as fragile as the wing of a butterfly.

Painful open wounds and sores form where this exceptionally fragile skin is damaged – in some cases, internal linings and organs are also affected. Complications as a result of secondary infection and extensive scarring are factors that people living with EB often have to face.

Why are we are raising awareness ?

We are currently raising awareness of this condition as my self, my mum and my son all have the condition. However since having my son me and my partner was opened up to the reality of how little awareness there is through the ignorance and abuse we received from people unaware of the condition. This then motivated us to raise awareness to help others who are receiving the same abuse at a time that is hard enough to deal with on a daily basis.

We know everyone cannot afford to donate and we appreciate that , we also appreciate any money that can be donated. However all we ask is that you get yourself informed about Eb and pass your information on to raise the awareness.

We are also current selling badges and bracelets to raise money for the charity that supports us. The bracelets are £3 and the badges are £2. Please contact Sophie Louise Green on face book or via her mobile on 07506766073.

If you would like any further information on the condition please go On the Debra website at https://www.debra.org.uk/

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team-connor-lynes-logo

Team Connor Lynes fundraising

Connor Lynes was just 14 years old when he suffered a near fatal blood clot on his brain, after playing Rugby League in Hull.

As a result, he suffered 2 strokes and underwent two operations to try and remove the clot.  

The procedure was unsuccessful, and he has been left with life changing medical needs and still has the clot on his basiiler artery in his brain, leaving his prognosis uncertain.

Connor has been left with this very rare condition but despite daily struggles and the high risk of further strokes, he has set up his own foundation to help raise awareness of brain injury and stroke in children, whilst raising funds for those who supported him.

Incredibly, he has raised around £5000.00 for 4 main charities, including The RFL Benevolent Fund, Life for a Kid, Paul for brain recovery and Leeds PICU, by doing various events in and around Hull.

Connor also set up an event via Facebook and Twitter to encourage people to change their profile picture or take a selfie with his logo and use the hash tags #teamconnor #childhoodstroke #bebrainsmart #geteducated.

Supported by all Super League teams, Melbourne Storm, as well as amateur teams from around the region, the event went viral and raised awareness of brain injury and strokes. He has a few events set up including a charity touch rugby match and a beanie hat for brain injury project, which was inspired by our friends down under.

Connor was recently asked to become the youngest patron for Life for a Kid at 14 and is now fully supported by this amazing charity. Connor wants to make everyone aware of brain injury and strokes, and knows how lucky he has been, and says “if his message helps one person recognise the signs and symptoms or encourages them never to give up than his battle will be worth it”.

Facebook; Team connor lynes fundraising. Or Team connor lynes raising awareness of brain injury. Twitter; @connor_lynes

andrew-okwell

Quadzilla Fundraising

I am completing a charity fundraising event each month of 2016.  

This month I was going to take place in Rhino-gladiator in St Helens but it was unfortunately cancelled. This left me struggling for an event. So I got together with my Dad and planned my own challenge.  

I have never even attempted a triathlon before but we knew we were going to beautiful New Quay,  Wales for the bank holiday and decided to plan a multi sport event around this.  I will be completing the 46 mile course by swimming (1 mile), kayaking (5 miles), running (10 miles) and cycling (30 miles) in as fast a time as possible. This will be hugely weather dependant, so may be put off until the next date. Ultimately if the British weather means any risk to my wellbeing the challenge would need to be brought indoors (swimming pool/gym) with a rowing machine replacing the kayak.

We have named this challenge “Quadzilla” as we think it’s a monster. I am taking part in this challenge to raise awareness for both the #itsoktotalk and #andysmanclub campaigns launched by Luke Ambler after his Brother in Law took his own life. The campaigns are to raise awareness of mental health issues in young men. For anybody wishing to donate there is a link below for the crowd funding page on Just Giving for #andysmanclub

https://www.justgiving.com/crowdfunding/

Many thanks for taking the time to read this, much appreciated. 

Cheers

Andrew Okell

kai

Kai Gill – Fundraising

Hello!

My name is Kai Gill and I’m 21 years old. I have a disability called Limb Girdle Muscular Dystrophy Type 2D. This is a muscle wasting condition that means I can’t walk and struggle to lift my arms. Despite having MD I live my life to the dream and never let my disability stop me from achieving my dreams.

I play powerchair football at elite level in the National League Championship. I am the captain of the national league side called East Riding Electric Eels.  I have recently been told I need a molded backrest to support my spine and upper body. However, this costs between £850 – £1,000. I have managed to raise £850 through sponsorship from East Yorkshire Shutters and Wheelchair Sports Hull. For the remaining £150, I am auctioning rugby league memorabilia that has been donated by professional rugby league players. Jake Webster has donated a signed Castleford Tigers Shirt and Shaun Lunt has donated signed boots.

The first item that is up is a signed Castleford Tigers 2015 Away Shirt worn by Steve Crossley. You can bid on this here: http://ebay.eu/2aVVMVz

I hope you can help whether it’s by sponsoring or bidding. Please email me: [email protected] if you would like further details.

Thanks!

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Evans Halshaw Kia – Hull

I’d just like to say a massive thank you to Shaun Carr and the rest of the guys at Evans Halshaw Kia in Hull for kindly supplying James Greenwood, Nick Scruton, James Donaldson, Jamie Ellis and myself with a Kia vehicle to travel back and forth to training in. They have some amazing deals on some fantastic cars so please if you are travelling by please pop in and say hello and see for yourself the awesome deals they have on offer or visit there website by clicking the link below.

http://www.evanshalshaw.com/dealers/kia-hull/

Thank you for taking the time to read this post and visiting my website.

Lunty

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HQ9

If you think you or your child has what it takes to become a Rugby League star or if its always been a burning desire of yours but never got that lucky break. I have created a player profiling platform in which players can create a profile and showcase themselves to the professional work of rugby league.

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Shaun Lunt, Hull KR

Newly Updated Website

Firstly i would like to thank Damien and the rest of the team at FishTank Creative for the amazing work they have done. They have been awesome to work with giving me ideas and also respecting my own ideas and developing them. I can’t recommend these guys enough.

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