Raised: 81%
Target: £200,000.00
Raised so far: £161,460.83
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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.

In lieu of services very kindly rendered by Mr Steve Ingram, building surveyor of Delph. Many thanks. Donation by Paul Ackroyd 23/03/09  

£1,200.00 + £338.46 Gift Aid

From A2 Donation by PAA 23/03/09  

£38.00 + £10.72 Gift Aid

..another milestone Donation by SA 11/03/09  

£30.00 + £8.46 Gift Aid

Proceeds of Table Top sale of goods Donation by Tony & Susan Ackroyd 09/03/09  

£116.54 + £32.87 Gift Aid

From my 50th party last Nonember..A very late present from Janet and Jill. Love to you all x Donation by Lucy Franklin 26/02/09  

£40.00 + £11.28 Gift Aid

For a grand little lad with a twinkle in his eye Donation by Tony Ackroyd 19/02/09  

£100.00 + £28.21 Gift Aid

LB43 Andy Lakin's CustomKiteBoard Deck Donation by CKB Boards 29/01/09  

£120.00 + £33.85 Gift Aid

good luck and best wishes Donation by peter archer 22/01/09  

£20.00 + £5.64 Gift Aid

Good luck - Alex Donation by CKB Boards 11/01/09  

£20.00 + £5.64 Gift Aid

From A2 Donation by PAA 09/01/09  

£31.00 + £8.74 Gift Aid

meant to do this ages ago but could not remember my pass word to log in.From a man called Bob Storey, its a long story. Donation by alison labrey 28/12/08  

£10.00 + £2.82 Gift Aid

Thanks Dave S Donation by Cousin Jane 26/12/08  

£20.00 + £5.64 Gift Aid

Thank you Old Oak Garden Centre Donation by Cousin Jane 26/12/08  

£60.00 + £16.92 Gift Aid

Old Oak Garden Centre for help and a wonderful Xmas Tree Donation by JSB 25/12/08  

£121.00 + £34.13 Gift Aid

Donation by SMA 16/12/08  

£20.00 + £5.64 Gift Aid

Happy Christmas, Jeanette Donation by Susan 02/12/08  

£10.00 + £2.82 Gift Aid

From all at A2 Donation by Paul Ackroyd 25/11/08  

£72.00 + £20.31 Gift Aid

What a staggering total raised so far for Edward and others in his situation. Donation by Andrea Walsh 21/11/08  

£100.00 + £28.21 Gift Aid

Thanks from Ben and phatnphunky at www.community.flexifoil.com Donation by lolage (Ben Davies) 09/11/08  

£10.00

Raffle for CustomKiteboards 60th Party held at Airbossworld Extreme Sports Centre, Halloween Event 1st-2nd Nov. 2008 - www.airbossworld.co.uk Donation by CKB Boards 03/11/08  

£465.00

Good luck with the fundraising,(friend of shane) Donation by NEIL BEEFORTH 30/10/08  

£25.00 + £7.05 Gift Aid

saved coppers Donation by SA 29/10/08  

£21.55 + £6.08 Gift Aid

I am a friend of Aaron Spencer Donation by Diane Stokes 14/10/08  

£36.00 + £10.15 Gift Aid

Donation by Hamaad, Atif, Raza 11/10/08  

£50.00 + £14.10 Gift Aid

Donation by Jo Dean 10/10/08  

£20.00 + £5.64 Gift Aid

Donation by John 01/10/08  

£20.00 + £5.64 Gift Aid

A2 Accident Solicitors Donation by Paul Ackroyd 08/09/08  

£23.00 + £6.49 Gift Aid

Various donations Donation by SMA 08/09/08  

£35.00

A2 Accident Solicitors Donation by maisie 18/08/08  

£50.00 + £14.10 Gift Aid

cheers from us that did the beer walk. sorry its taken so long but i have only just recovered from the hangover! Donation by alison sowden 28/07/08  

£316.00 + £89.13 Gift Aid
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* Total raised online: £16,232.02
  Offline donations: £145,228.81
  Gift Aid plus supplement: £3,535.60

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