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.

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

with our best wishes Donation by sheila and peter rushworth 23/07/08  

£25.00 + £7.05 Gift Aid

Donation by SMA 20/07/08  

£80.00 + £22.56 Gift Aid

Happy Birthday Dad and Paul Donation by Michael, Sara & James 03/07/08  

£35.00 + £9.87 Gift Aid

Happy Birthday Dad. Donation by John, Suzanne, Ben & Lucas 03/07/08  

£20.00 + £5.64 Gift Aid

HAND-MADE CARDS.. many thanks to ALMA HARTLAND whose card sales now total £81:70 Donation by Susan 28/06/08  

£12.50

Thank you to all our friends who have so kindly donated for my 40th, hope you enjoyed the "bash"! Donation by paul Ackroyd 25/06/08  

£105.00 + £29.62 Gift Aid

Thank you all at A2 for your kind support for my 40th Donation by Paul Ackroyd 25/06/08  

£85.00 + £23.97 Gift Aid

Happy 40th Paul Donation by Stan, Vanya, Heather & Abigail 24/06/08  

£40.00 + £11.28 Gift Aid

Birthday Wishes! Jane, Paul, Adam & Wills Donation by Dransfield 24/06/08  

£40.00 + £11.28 Gift Aid

A2 Accident Solicitors Donation by MAISIE 24/06/08  

£30.00 + £8.46 Gift Aid

QUIZ: now up to £115 Donation by SMA 24/06/08  

£8.00

Donations from my 40th party, to stop Paul & Dave singing! Donation by Paul Ackroyd 23/06/08  

£174.00

Good luck bud, best wishes Donation by Sam Lawman - from CKB boards (rider) 21/06/08  

£50.00 + £14.10 Gift Aid

More QUIZ sales TOTAL to DATE: £107 Donation by SMA 21/06/08  

£11.00

More proceeds from Coffee Morning - GRAND TOTAL now £600. Thank you to all who supported. x x Donation by SMA 21/06/08  

£28.00

Donation to Coffee Morning fundraising event Donation by SMA 21/06/08  

£21.00 + £5.92 Gift Aid

Diggle School Fête GRAND DRAW winner Ewa Hartland: many thanks for donating your prize. x x Donation by SMA 17/06/08  

£100.00

Birthday wishes, thanks Jeanette Donation by Susan 16/06/08  

£10.00 + £2.82 Gift Aid

In Grandma's memory. Thank you all for your continued support. Donation by Paul Ackroyd 02/06/08  

£500.00 + £141.03 Gift Aid

A2 Accident Solicitors Donation by Maisie Scholes 23/05/08  

£33.00 + £9.31 Gift Aid

Donation by Scott Swinton 17/05/08  

£500.00 + £141.03 Gift Aid

£100 Allan's printer (+£50 to Leukaemia Research) Donation by Susan Ackroyd 08/05/08  

£50.00

QUIZ sales; thank you Chris McG. Donation by Susan Ackroyd 08/05/08  

£17.00

Best Wishes Donation by Mat Speed 07/05/08  

£50.00 + £14.10 Gift Aid

Many thanks to Keith Turmeau. Donation by T & S 30/04/08  

£50.00

Raised through the sale of lovely hand-made cards. Thank you so much Alma (Hartland) Donation by Susan 23/04/08  

£25.00

Auction of Glyn's packed lunch! Donation by Tony 22/04/08  

£2.00

No SEA VIEW at Whitby!! Donation by Tony & Susan 22/04/08  

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

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