Raised: 81%
Target: £200,000.00
Raised so far: £161,621.03
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My story

 

STOP PRESS:

We are grateful to Jeff Hird of X-Liesure for his support and sponsored slim.  He raised the magnificent sum of £2135 which was presented to us at the tenants meeting on the 1st December at their Christmas party.  Many many thanks to Jeff, his staff and all those who contributed to his efforts.  Tony & Susan and Family, especially Edward.

Many thanks to K D Decoratives Ltd for their kind donation of £4400 and their continued support.  Thanks to Richard,  Gloria and David, Matthew and James for their outstanding generosity.      

We can't thank Richard, Gloria, David, Matthew. James and Jeff enough for their help, not forgetting Stephen Brogan who was instrumental in introducing us to these fabulous people.

HURRAY, we have  surpassed our target of £150,000! .   Thanks to all who have supported us over the passed 2 years. We could not have done it without you.  We have been staggered by the phenomenal support we have had and can't thank people enough.  So far most events have been complete sell outs.

We raised over £20,000 at the two dinners we held in November and December 2008. 


Our 3rd Annual Dinner and dance is to be held at the White Hart Hotel on the 7th December.  Tickets priced £35 are still available from Susan Ackroyd.  Email sackroyd@mac.com


Sponsored walk across Morecambe Bay was held on the 15th August 2009

The walk raised £2358.50 towards funding clinical trials and further research.



 

A new target will be set which we believe CAN be achieved with the support of all our friends and relatives and hard work by the fund raisers.


If you haven't already, please visit (www.sayhellotoedward.com) You can still view the music video, " Never Say Goodbye," produced by some of Edward's incredible friends, as well as keping up to date with our campaign.


The money raised so far has enabled the charity to start funding a research programme at Oxford University.  We hope by this time next year to have some result and proceed to clinical trials sometime thereafter.  This could not have been achieved without your support.


Edward, our 6 year old grandson who we believed to be a perfectly healthy child, was diagnosed in May 2007 with Duchenne Muscular Dystrophy; a degenerative and as yet, incurable muscle wasting disease.

Duchenne Muscular Dystrophy (DMD) affects 1 in every 3,500 boys born. It can also affect girls, although this is very rare.
Children with DMD cannot produce dystrophin, a protein necessary for muscle strength and function. As a result, every skeletal muscle in the body deteriorates. THERE IS NO CURE.

For the moment, Edward is a lively, child who adores life and doing everything that an active 5 year old enjoys. While the disease has yet to show its devastation, the stark facts about DMD are hard to believe:
DMD has a 100% fatality rate; on average DMD boys die in their late teens or early twenties; most boys with DMD are in a wheelchair from age 10-12 years old;  DMD is associated with respiratory failure, heart failure, and debilitating orthopaedic complications.


The money raised by us will go towards funding critical research projects aimed at identifying a cure (and effective treatments), for this life shattering condition. ACTION DUCHENNE - Cure Duchenne Muscular Dystrophy (www.actionduchenne.org) is a registered charity and funds vital research.  We are a small charity run by the parents for the benefit of their children with  all monies but essential expenses, going into research.  

If you prefer to donate offline can send a cheque to the charity at ACTION DUCHENNE Epicentre 41 West Street London E11 4LJ

WE NEED YOUR HELP. WITHOUT A CURE THERE IS NO HOPE FOR ANY BOY WITH DMD. PLEASE GIVE GENEROUSLY

Many thanks for your kindness in making this donation.

We really hope you succeed Donation by Ray & Linda Kershaw 19/07/07  

£25.00 + £7.05 Gift Aid

With our very best wishes to you all. Donation by Lucy,Brian & Ellis Franklin 18/07/07  

£25.00 + £7.05 Gift Aid

Donation by Anon 17/07/07  

£251.00 + £70.79 Gift Aid

With our best wishes xx Donation by Joanne, Jason, Matthew and Daniel 16/07/07  

£10.00 + £2.82 Gift Aid

from Della and Charlie Donation by Della and Charlie Buckley 16/07/07  

£100.00

From Solicitors dressing down! Donation by A2 Accident Solicitors 16/07/07  

£20.00

Donation by Andrew & Debbie Clark 14/07/07  

£10.00 + £2.82 Gift Aid

we are all with you, you are not alone. Donation by Steve & Tatjana 14/07/07  

£20.00 + £5.64 Gift Aid

Great Cause Thanks Donation by Phil Atkinson 13/07/07  

£10.00 + £2.82 Gift Aid

Good luck with your fund raising Donation by Sian 13/07/07  

£10.00 + £2.82 Gift Aid

Good luck with your fundraising. XX Donation by John, Julie, Bethie & Ollie 13/07/07  

£10.00 + £2.82 Gift Aid

Good Luck !! Donation by Mark, Lucy, Sam & Ruby 12/07/07  

£20.00 + £5.64 Gift Aid

Great Idea Donation by Jenny Shore 12/07/07  

£20.00 + £5.64 Gift Aid

Donation by Emma Bardsley 12/07/07  

£20.00 + £5.64 Gift Aid

Very best of luck with the fund raising. Donation by Kathryn & Ivan Pullar 12/07/07  

£10.00 + £2.82 Gift Aid

Donation by Audrey Walker 12/07/07  

£5.00

Donation by John Phillimore 11/07/07  

£10.00 + £2.82 Gift Aid

This is a great idea for a fantastic little boy Donation by Kate, David & Archie Scott 10/07/07  

£50.00 + £14.10 Gift Aid

Good luck with the fundraising. Donation by Jane & Paul Dransfield & boys 10/07/07  

£20.00 + £5.64 Gift Aid

With our best wishes Donation by Simon & Daniel @ Box Legal 10/07/07  

£1,000.00

Donation by Mia & Tony 10/07/07  

£20.00

from all your friends at little acorns.God bless Donation by little acorns 10/07/07  

£250.00 + £70.51 Gift Aid

there's strength in numbers - together we can make today's dream tomorrow's reality :) Donation by Kate Kent 09/07/07  

£20.00 + £5.64 Gift Aid

Donation by 'anonymous' 09/07/07  

£20.00 + £5.64 Gift Aid

Very best wishes and every sympathy. Donation by Derek 09/07/07  

£10.00 + £2.82 Gift Aid

Best wishes to Edward and all the family. Donation by Chris, Vicki, Tom and Louise 08/07/07  

£20.00 + £5.64 Gift Aid

Donation by Neil Sampson 08/07/07  

£20.00 + £5.64 Gift Aid

may this help a little Donation by Lauris Ashton 08/07/07  

£20.00 + £5.64 Gift Aid

Donation by Chris Turner 07/07/07  

£20.00 + £5.64 Gift Aid

Hope this helps Donation by Sara Jackson 07/07/07  

£20.00 + £5.64 Gift Aid
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* Total raised online: £16,392.22
  Offline donations: £145,228.81
  Gift Aid plus supplement: £3,580.79

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