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.

Preceeds from a car boot sale of toys. Good luck. Donation by Susan Swinton 05/11/07  

£100.00

with love, freddie and Samuel Mayall Donation by Lynne B 03/11/07  

£20.00 + £5.64 Gift Aid

Good luck for your target Donation by David & Tricia Whiteley 01/11/07  

£20.00 + £5.64 Gift Aid

From Peter and Linda Goddard, Thanks Very much, from Edward Donation by Tony Ackroyd 29/10/07  

£20.00

HAPPY BIRTHDAY Allan & Leslie, thank u so much for choosing PPUK; we have had offline donations too Donation by Susan and Tony 28/10/07  

£20.00 + £5.64 Gift Aid

Happy Birthday Allan, from Ewa & Paul Donation by SMA 27/10/07  

£20.00

Happy Birthday Allan, from Carole Donation by SMA 27/10/07  

£10.00

Donation by PAA 26/10/07  

£20.00 + £5.64 Gift Aid

Happy Birthday and Thanks for the cot Donation by Michael and Sara 24/10/07  

£25.00 + £7.05 Gift Aid

Balance of sale of Cot on Ebay (£9.00 paid via MissionFish) Donation by Paul Ackroyd 19/10/07  

£11.00 + £3.10 Gift Aid

Donation by PAA 12/10/07  

£20.00 + £5.64 Gift Aid

Love Daddy..first of many E bay sales! (The old Raybans!) Donation by Paul Ackroyd 12/10/07  

£40.00 + £11.28 Gift Aid

With our best wishes. Donation by John & Susan Watts 05/10/07  

£20.00 + £5.64 Gift Aid

From Rotary Club of Manchester, Thank you very much it is appreciated Donation by Tony Ackroyd 05/10/07  

£200.00

Happy Birthday Michaela hope you have a fab day xx Donation by Kate, David & Archie Scott 04/10/07  

£10.00 + £2.82 Gift Aid

Donation by Christine Dyer 02/10/07  

£20.00 + £5.64 Gift Aid

Good luck Donation by MAGSY AND CRAIG 01/10/07  

£30.00 + £8.46 Gift Aid

From A2. Thank you everyone for the continued support. It is very much appreciated. Donation by Paul 28/09/07  

£20.00 + £5.64 Gift Aid

Donation by Jack & Arthur Goodman 22/09/07  

£15.00

We hope this will in some way help the Charity Donation by All at Delph PTA 22/09/07  

£50.00

from A2 Donation by Anon 17/09/07  

£20.00 + £5.64 Gift Aid

Good luck, you are all in our thoughts and prayers Donation by Rachel Hindle 14/09/07  

£20.00 + £5.64 Gift Aid

To take it over the 10K. Keep it going! Donation by Scott Swinton 13/09/07  

£20.00 + £5.64 Gift Aid

Donation by Peter Holding 12/09/07  

£20.00 + £5.64 Gift Aid

Good luck for future fund raising Donation by John & Dilys Redfearn 09/09/07  

£50.00 + £14.10 Gift Aid

You're in our thoughts, you're in every parents thoughts.. Donation by Darrel and Esme Crilley 08/09/07  

£100.00 + £28.21 Gift Aid

My thoughts are with your family Donation by Debbie 04/09/07  

£20.00 + £5.64 Gift Aid

For Jack & Margarets 50th wedding anniversary Donation by Kate Scott 28/08/07  

£10.00 + £2.82 Gift Aid

As grandparents, Ann & I were greatly moved by your article the the August Plus magazine Tony. Donation by Keith & Ann Simpson 28/08/07  

£100.00 + £28.21 Gift Aid

Donation by Anonymous 28/08/07  

£20.00 + £5.64 Gift Aid
Donate now
 
* Total raised online: £16,232.02
  Offline donations: £145,228.81
  Gift Aid plus supplement: £3,535.60

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