Raised: 81%
Target: £200,000.00
Raised so far: £161,581.03
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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.

In memory of Auntie Mary (Elgie) Donation by Susan 07/07/07  

£100.00 + £28.21 Gift Aid

Good luck with the fundraising - great idea! Donation by Odette, Steve, Libbie, Anthony, Lucy 06/07/07  

£100.00 + £28.21 Gift Aid

Really shocked. Keep strong. Edward is so lovely. Donation by Deborah & Richard Martin 06/07/07  

£20.00 + £5.64 Gift Aid

A brilliant idea! optimism's the key. Much love. Donation by irene west 06/07/07  

£50.00 + £14.10 Gift Aid

for my friend,Edward. Donation by william,joseph and oliver sowden 06/07/07  

£50.00 + £14.10 Gift Aid

Love from us in New Zealaand Donation by Jill Smith 06/07/07  

£40.00

Our thoughts are with you all! Keep strong! Donation by Chris Bracey & Family 05/07/07  

£25.00 + £7.05 Gift Aid

Good luck Donation by Kulbinder 05/07/07  

£20.00 + £5.64 Gift Aid

Donation by Mark Flint 05/07/07  

£20.00

To help a most gorgeous little boy! Donation by anonymous 05/07/07  

£500.00 + £141.03 Gift Aid

With our best wishes. Donation by Rod and Jan Sandy 05/07/07  

£10.00 + £2.82 Gift Aid

Good luck with the fund raising - we hope it makes a difference. Donation by Ian and Carol Smith 04/07/07  

£10.00 + £2.82 Gift Aid

Great idea Dad. Donation by John Suzanne Ben Lucas 04/07/07  

£20.00 + £5.64 Gift Aid

With our best wishes Donation by Janet & Eric Watts 04/07/07  

£20.00 + £5.64 Gift Aid

We pray that research will be in time for Edward Donation by Beth Thewlis 04/07/07  

£5.00 + £1.41 Gift Aid

Great idea Tony - love to you all. Donation by Lily Hopkinson 04/07/07  

£20.00 + £5.64 Gift Aid

Donation by Cousin Jane 04/07/07  

£50.00 + £14.10 Gift Aid

Top idea. Good luck Tony & family Donation by scott swinton 04/07/07  

£20.00 + £5.64 Gift Aid

We will help wherever we can Donation by Linda Bird & Melvyn Pryce 04/07/07  

£50.00 + £14.10 Gift Aid

I hope a cure is found God Bless Donation by angela knowles 04/07/07  

£20.00 + £5.64 Gift Aid

Donation by Kathleen &Paul Johnson 04/07/07  

£20.00 + £5.64 Gift Aid

Donation by Joanne Hirst 04/07/07  

£10.00 + £2.82 Gift Aid

every little helps Donation by Hans Pat and Marcus 04/07/07  

£100.00 + £28.21 Gift Aid

What a lovely smile! xx Donation by Debbie Sykes 04/07/07  

£10.00 + £2.82 Gift Aid

He's gorgeous XXX Donation by Hayley Hopkinson 03/07/07  

£10.00 + £2.82 Gift Aid

To help Edward find a cure. God bless him Donation by Rose 03/07/07  

£20.00 + £5.64 Gift Aid

Donation by Anon 03/07/07  

£5.00 + £1.41 Gift Aid

Tony what a great idea. Happy Birthday Love H Donation by Heidy Ackroyd 03/07/07  

£20.00 + £5.64 Gift Aid

HAPPY BIRTHDAY, Tony Donation by Susan 03/07/07  

£50.00 + £14.10 Gift Aid

Thanks Dad this is wonderful, love Paul. Donation by Paul Ackroyd 03/07/07  

£20.00 + £5.64 Gift Aid
Donate now
 
* Total raised online: £16,352.22
  Offline donations: £145,228.81
  Gift Aid plus supplement: £3,569.50

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