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Raising Awareness For MECP2 Duplication Syndrome

Raising Awareness For MECP2 Duplication Syndrome

Neil Spofforth25 Mar 2016 - 19:06
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Special guest at Ossett Town v Harrogate Railway Athletic on 2 April.



When we host Harrogate Railway Athletic on Saturday 2 April we will have a special guest, Alfie Lund.

It will be Alfies first trip to Ossett Town, but he is well known to us following our game at Burscough earlier in the season when we met him for the first time and became the latest club to donate a scarf and flag to the cause.

Alfie’s father Mark picks up the story. “I travel round football grounds raising awareness for my son’s life limiting disorder. Alfie is eight, he cannot walk or talk and to raise awareness we asked supporters from all clubs to donate a scarf, shirt or flag.

We then tie them all together to hopefully set a world record. It is currently two miles long with the donations we have received.

When we come to a club we only bring a small section to put on display.

Why are we doing this?  Football is one thing that unites many people. It generates excitement amongst fans all over the world and is a great way to raise awareness.  

Our beautiful little boy Alfie suffers from and very rare incurable genetic disorder called Mecp2 Duplication syndrome.  He is unable to walk or talk and needs help with all aspects of daily living.  

He has profound and multiple learning difficulties and will almost certainly have a shortened life expectancy due to chronic chest infections and pneumonia which he is unable to fight in the same way as a healthy child.

We set up Alfie's fund to raise funds for specialist equipment he needs to make his life as comfortable as possible and raise awareness of his little known disorder.  

Alfie was only the seventh child in the UK to be diagnosed, that number now stands at approximately 28.

Due to the success and huge amount of support Alfie's fund has received we have now turned our attention to MECP2 Duplication UK, a newly founded charity who aim to support children and families affected by the disorder and who my wife is a trustee and the secretary.

We want to help raise the profile of the charity and hopefully some funds along the way for them.

The interest the football chain has created so far has been amazing.  We have been sent items from all over the world and are now taking the chain to football grounds around the country.  

It seam’s to be quite a crowd puller and is getting more people  through the gates.  The football chain has had huge interest in Germany and we have had visits bringing scarves over from Europe

At the end of the season we hope to sell/auction off all items if they make £1 or £20 all monies raised will go to MECP2 Duplication UK.

If your club would like to get involved either by arranging a visit with the chain or donating an item for the chain please get in contact.

The challenge has created  some media interest,  You can view our interview with ITV News at http://http://www.itv.com/news/granada/update/2015-01-17/dads-football-collection-stretches-for-2-miles/

or listen to our interview for BBC Radio Merseyside at http://www.bbc.co.uk/programmes/p02grtng?fb_ref=Default approximately 2 hours into the recording.

Or look at the article in The Mirror newspaper at http://www.mirror.co.uk/news/uk-news/family-little-boy-rare-genetic-4905789#ICID=sharebar_facebook amongst others.

Alernatively you can view all articles or find out more information at ITV News

or listen to our interview for BBC Radio Merseyside approximately 2 hours into the recording.

Or look at the article in The Mirror newspaper amongst others.

Alernatively you can view all articles or find out more information at Facebook/thealfielundfund

Further reading