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.

Happy Christmas. R&A and J&B Donation by Susan Ackroyd 29/12/09  

£40.00 + £11.28 Gift Aid

This money has been donated by the employees at Hitichen Foods by organising a Christmas Jumper Competition. Donation by Ann Flannery 26/12/09  

£120.20 + £33.90 Gift Aid

saved change Donation by Susan Ackroyd 30/11/09  

£11.87 + £3.35 Gift Aid

Donation by Richard Lowe 23/11/09  

£16.00

Donation by Paul Ackroyd 22/10/09  

£68.00 + £19.18 Gift Aid

Managed to get logged in at last! Donation by CKB Boards 20/10/09  

£5.00 + £1.41 Gift Aid

Sale of Plants & bits and bobs Donation by Ewa Hartland 20/10/09  

£43.50 + £12.27 Gift Aid

Cake money!! Donation by Kate Scott 03/10/09  

£10.00 + £2.82 Gift Aid

Thanks for a lovely stay at Beck cottage. Scott, Cheryl & Baby Rose. xx Donation by Scott Swinton 28/09/09  

£40.00 + £11.28 Gift Aid

saved coppers Donation by SA 23/09/09  

£6.59 + £1.86 Gift Aid

Sale of plants Donation by Ewa Hartland 05/08/09  

£25.00 + £7.05 Gift Aid

Good luck on your sponsered walk next month. Donation by Scott Swinton 29/07/09  

£20.00 + £5.64 Gift Aid

Donation by Paul Ackroyd 24/07/09  

£63.00 + £17.77 Gift Aid

Sorry I wasn't aware of this website previously! Best wishes Donation by Stephen Harris 13/07/09  

£30.00 + £8.46 Gift Aid

Saved change Donation by Susan 10/07/09  

£12.00 + £3.38 Gift Aid

Sale of plants Donation by Ewa Hartland 27/06/09  

£22.50 + £6.35 Gift Aid

Many thanks to Keith & Joyce Lamb (fellow pilgrims at Walsingham) Donation by Susan Ackroyd 27/06/09  

£30.00

Donation by ckb boards 26/06/09  

£10.00

Many thanks , Audrey x x Donation by Susan Ackroyd 26/06/09  

£5.00

Thanks all for my birthday greetings. x x Donation by Susan 13/06/09  

£60.00 + £16.92 Gift Aid

saved coppers Donation by SA 11/06/09  

£14.77 + £4.17 Gift Aid

Many Thanks to Cathryn & Louise & all on The Lancome Counter at Debenhams, Oldham. The proceeds of the raffle held at a Lancome beauty evening. Donation by Heidy Ackroyd 03/06/09  

£46.00

From A2 Donation by Paul Ackroyd 22/05/09  

£40.00 + £11.28 Gift Aid

Morecambe Bay x 2 Donation by Maurice Stanley 21/05/09  

£20.00

Maurice ran the Manchester Run wearing his Action Duchenne running vest. This is for his effort! Donation by Margaret Stanley. 20/05/09  

£20.00

Good luck on Morecambe Bay everyone - don't stop to pick any cockles!!! Donation by Rob Plummer 14/05/09  

£20.00 + £5.64 Gift Aid

All the best with your fund raising Donation by Lawrence Perrins & Sons Ltd 14/05/09  

£10.00

Best wishes and good luck Donation by Reg Thornes 28/04/09  

£20.00 + £5.64 Gift Aid

Car boot Donation by Susan & Tony 28/04/09  

£28.00 + £7.90 Gift Aid

Many thanks to DEMOLITION FASHIONS of Yorkshire Street, Oldham Donation by SMA 17/04/09  

£163.00
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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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