2012/13.  We need your help to raise further funds for clinical trials.

If anyone reading this would like to promote an event, please get in touch with us on

tonyackroyd@btinternet.com

December 2011

Many thanks to Kim C for organising the Christmas Event at Rochdale Football Club which raised £3191.  Nice one Kim.  We are all very pleased that you are helping us and continue to support Edward.

 

 20th September 2010

Many thanks to the members of Uppermill Methodists Church who have just given us another donation of £1900.  This makes a total of £4536 over a two year period.   We are extremely grateful for their continued generosity.

Tony and Susan and Family.

We are grateful to Malcolm and Margaret Hill, Chairman and his lady , together with Gill Bussey for organising a cheese and wine evening at Malcolm's house which raised the grand sum of £1060 and was presented to Heidy on the 3rd of February at the Saddleworth Rotary Club meeting.

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 3 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 £40,000 at the three dinners we held in  December 2007/8/9. 

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. 

The money raised so far has enabled the charity to start funding a research programme at Oxford University.  Money has also been allocated to a pharmacutical company in the USA, AVIBOIPHARMA, who are developing a drug to skip Exon 45 which is the Exon Edward needs to skip.  Hopefully he will be elligible for a clinical trial in 2012.

Edward, our 8 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 8 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.