Duchenne Muscular Dystrophy Research Prize Draw Winners

by Admin 7/29/2008 11:53:00 AM
 

Well done to everyone who turned up at the Dance in the Malin Head Hotel last weekend for the music, banter and of course the results of the Duchenne Ireland - Duchenne Muscular Dystrophy Research - Prize Draw.

A supreme THANKS YOU! to all of the families, friends, local communities and especially the Malin Head GAA club who went out of thir way to help us organize and sell tickets for this event.

We hope everyone had a great time and hope to see many more of you at the future Duchenne Ireland Events.

IMPORTANT - Thanks to your efforts, Duchenne Ireland has published our first of many research grants to drive research into this terrible disease.

Don't forget that you too can do your own event for Duchenne Ireland. Just organize it, send us the details on info@duchenne.ie and we will do our best to promote your event to our many media contacts as well as place it on our Duchenne Ireland website Events page.

 

 

Congratulations to all of the luck winners:

First Prize - €1000 Cash
Philip Doherty, Buncrana

Second Prize - Slieve Russell Hotel + €150 Cash
John Dowds, Burt
Third Prize - Radison Hotel + €150 Cash
Emer Mc Glynn, Letterkenny
Fourth Prize - Benidicts Hotel + €150 Cash
Liam mc Colgan, Iskaheen

Fifth Prize - Malin Hotel + €150 Cash
Roddy Duggan, Portsalon

 



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4 Top Golf Clubs Support "Golf 4 Duchenne"

by Admin 7/23/2008 2:34:00 PM
 

 

The K Club, the European Club, Blainroe GC and Wicklow GC have provided a set of 4 green fees for each of the clubs to be prizes for a new draw to support Duchenne Ireland in it's fundraising efforts for Children with Duchenne Muscular Dystrophy.

The Smurfit Course at The K Club has already been described as probably the greatest inland Golf Course to be developed in Ireland.

Please contact Duchenne Ireland by email on info@duchenne.ie or call John on 083-3348634 for Entry Forms. 



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McHugh hits out at Duchenne 'insult'

by Admin 7/13/2008 10:39:00 PM

McHugh hits out at Duchenne 'insult' 30.06.08

THE plight of two Inishowen families living with a rare and fatal condition has reached the floor of Dáil Eireann.
Three Inishowen boys suffer from Duchenne Muscular Dystrophy - Liam Mooney from Malin and Carn brothers Tony (7) and Bobby (2) Lafferty. The condition affects, on average, one in 3,500 males.
Last Thursday in the Dáil, Fine Gael Deputy Joe McHugh and his colleague Deputy Andrew Doyle called on the Government to find a way around regulations preventing the State from funding clinical trials.
“Two families in my constituency who have three boys affected by DMD between them have been fundraising for the past month and have raised €70,000. Time is not on the side of these families as premature death is looming for their children.
Liam Mooney
"It is unthinkable that the Government is unable to find a way to help fund their participation in the research which they say is their only hope," said Deputy McHugh. Fine Gael has suggested a mechanism for the Government to fund the charity being established by affected families, Duchenne Ireland, if they are unable to directly fund the British trials. Both deputies condemned the Government’s response that it had provided €9,000 of National Lottery funding to the Muscular Dystrophy information day. The Fine Gael deputies described this sum as an "insulting response in light of the plight of the families affected".

 

Original Article thanks to Inisowen News: http://www.inishowennews.com/08DuchenneMcHugh.htm



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Charity Begins At Home - Fundraising Effort For Brothers With Duchenne

by Admin 7/10/2008 5:07:00 AM


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Govt urged to find a way to fund life-saving chance for 150 children with Duchenne Muscular Dystrophy

by Admin 7/4/2008 11:28:00 AM

Breaking News

26
June
Govt urged to find a way to fund life-saving chance for 150 children with muscular dystrophy – FG

 

Fine Gael National Press Office Press Release

 

 
Leinster House Contact: Andrew Doyle TD
Dublin 2 Joanne Lonergan Joe McHugh TD
Ireland 01 6183858  
 
Thursday, 26 June 2008
 

Govt urged to find a way to fund life-saving chance for 150 children with muscular dystrophy - FG

 

Today (Thursday) in Dáil Éireann, Fine Gael Deputies Andrew Doyle and Joe McHugh, have called on the Government to find a way around regulations which prevent the Government providing funding clinical trials taking place in the UK. Deputies Doyle and McHugh said that 150 Irish families have children suffering from Duchenne Muscular Dystrophy whose best hope of survival lies in participation in UK clinical trials, which the Government is refusing to fund.

Deputy Andrew Doyle said:

"Duchenne Muscular Dystrophy (DMD) is a genetic condition that causes premature death by the age of 18-22. There is no effective treatment or cure for the condition which mainly occurs in boys. 150 families in Ireland are affected and their only hope lies in participation in UK clinical trials, known as Exon Skipping Trials. I understand that the contribution from Ireland to participate in the trial was agreed at £1.5 million but the Government is refusing to provide the funding on the basis that it cannot fund health research in the UK. With at least 150 young lives hanging in the balance it is incumbent on the Government to open their minds and find a way to provide the necessary funding."

Deputy Joe McHugh said:

"Two families in my constituency who have three boys affected by DMD between them have been fundraising for the past month and have raised €70,000. Time is not on the side of these families as premature death is looming for their children. It is unthinkable that the Government is unable to find a way to help fund their participation in the research which they say is their only hope. Fine Gael is suggesting that there must be a mechanism for the Government to fund the charity being established by the families, Duchenne Ireland, if they are unable to directly fund the UK trials."

Both Deputies condemned the Government's response in the Dáil today which represented a shirking of responsibility for sick Irish children. The Government said it was pleased to have provided €9,000 of National Lottery funding to Muscular Dystrophy information day but the Fine Gael Deputies described this as an insulting response in light of the plight of the families affected.



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Duchene Ireland Super National Draw

by Admin 6/26/2008 10:44:00 PM

 

Duchenne Ireland has launched a national prize draw with some smashing prizes to be won. Family Friends and local support groups are helping to sell the tickets at present. This is a fantastic way to help such a great cause and does not require any commitment of your time. Just €10 will put you in a chance to win one of 5 great prizes as follows. Duchene Ireland Supporters have been selling these tickets nation over the last two weeks and will continue to do so up until the draw date on the 25th July. 

Please lend your support for this great cause, and help us change the lives of kids with Duchenne Muscular Dystrophy. Please remember that 100% of everything raised will go directly to Duchenne Muscular Dystroph Research. Therapies are underway to help prevent this disease from robbing these kids of a chance at life, but they need funding support to progress into clinical therapies for the kids. 

A big thanks you to the GAA in Malin Head and all of the family and friends nationwide for helping us to sell these tickets. We would also like to thank the ticket sponsor Swilly Print Ltd. for their kind support in this effort to raise research funds.

Remember All hotel breaks also come with €150 cash prizes, and this draw will be for a limited number of ticket only....
Go on.....SNAP up a ticket now!


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Grandparents fight for their grandchildren by supporting new charity - "Duchenne Ireland"

by Admin 6/26/2008 10:39:00 PM


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Malin dad's delight at generous Inishowen

by Admin 6/20/2008 1:36:00 PM

A Malin Head dad said he has been wowed by the number of people helping to coin in cash for vital research which may save his sick son and thousands more.

Jimmy Mooney and his family, along with the Lafferty family - based in Carndonagh - say they have been blown away with the amount of support they have received from people in Inishowen after they revealed their three children have muscular dystrophy disease.

After they were snubbed help by the Irish government to pay for ground-breaking research - being carried out in the UK - they revealed their sad story to the 'Journal'.

The two heartbroken families set about raising cash for the research which they hope may help save their three children, Liam Mooney, aged six, Tony Lafferty, aged seven and his brother Bobby, aged two.
But just days after their heart-rendering story went into the Journal they were contacted by fundraisers who have kindly pledged to raise cash.

Jimmy told the Journal: "I just cannot get over the generosity of people in our community.

"We are all so grateful for everything.

"It is so encouraging to see us getting a response from this." And this weekend there are two major events taking place. There is a dance being held on Saturday night for Duchenne Muscular dystrophy in the Malin Hotel. This kicks off at 10.30pm and the music is by sister and brother Sharon and Gary, followed by a disco with PJ the DJ.
Tickets costs 10 euros which includes door prizes.
While 20 adventurous people, 16 of which are from Inishowen, will be taking to the skies on Saturday in Belfast to take part in an abseil in aid of the charity. The event, organised by Brian McGilloway, will see the brave soles abseiling down the Europa Hotel at around 2pm. One of the abseilers, Chantal Howard, said the dare-devils were really looking forward to the event. She told the Journal: "We are really excited - and it will be great to raise the profile of Duchenne Ireland.
"Hopefully we'll raise lots of cash."

And Malin GAA are in the process of holding a massive raffle to also rake in money.

Jimmy added: "On behalf of my family and the Laffertys I just want to thank everyone. "We are so touched by all these events and we know from experience that a lot of hard work goes into them." For more information about the dance contact 0861574454 or 0861664760.


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Flora Dublin City Womens Mini Marathon For Duchenne Research

by Admin 6/19/2008 9:45:00 PM

Duchenne Ireland took to the streets of Dublin for the 2008 Flora Womens Mini Marathon on 2nd June 2008. On this glorious bank holiday Monday, up to fifty supporters of Duchenne Ireland ran, walked (and some even crawled) the streets of Dublin in the annual Flora Womens Mini Marathon. Our supporters from all over Ireland joined together in Dublin city center to support "Duchenne Ireland" whose purpose is to raise awareness and funding for translational research into Duchenne Muscular Dystrophy.

Duchenne Muscular Dystrophy, a genetic disorder affecting 1 in 3,500 boys, gradually leaves them unable to walk by early teens and has a life expectancy in the late teens to early twenties in Ireland. Advances in health care outside Ireland have brought life expectancy higher in other countries and Duchenne Ireland is also driving to have this fact recongised by those who care for DMD patients in Ireland, to ensure Irish boys get this same standard of care.


 

Duchenne Ireland recently kicked off a nationwide fundraising drive in the hope to support a number of research projects currently underway in the UK, Holland and France, where gene therapy is showing promise in initial trials that would dramatically alter the course of this disease for the affected children.

"One has to remember, with this disease, we are dealing with the number 1 genetic killer of children worldwide" said John Gorman father of two boys who have Duchenne Muscular Dystrophy. All proceeds from the run go to Duchenne Ireland, a new charity set up specifically to fund translational research into Duchenne Muscular Dystrophy.

The charity hopes to raise a significant amount of money over the next six months and then continue to support worldwide research into the continued search for therapies and a cure for this terrible disease.

Go On, Give us your support today !

If you are thinking of doing a run or any other sporting event, please think about having Duchenne Ireland as your charity for the event. We, and all of the kids you would be helping would love your support.

Effectively save these kids lives by supporting directly via bank transfer or direct debit to the following bank account details:

        Duchenne Ireland
        Ulster Bank
        Moville, Co. Donegal
        Account Number: 10081297
        Sort Code: 98-61-25

Or contact us directly with donations or suggestions for events you would like to run n our behalf to info@duchenne.ie

NOTE: Remember if you contribute over EUR 250 in one year the taxman will give us back your tax ! See how here



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Up to Govt to assist children with Muscular Dystrophy to take part in UK trial – Doyle calls for urgent action

by Admin 6/10/2008 11:02:00 PM
5
Jun 2008
Up to Govt to assist children with Muscular Dystrophy to take part in UK trial – Doyle calls for urgent action

Up to Govt to assist children with Muscular Dystrophy to take part in UK trial – Doyle calls for urgent action

Fine Gael National Press Office Press Release

..................................................................

 
Leinster House Contact: Andrew Doyle TD
Dublin 2 Joanne Lonergan Wicklow
Ireland 01 6183858  
 
Thursday, 5 June 2008
 

Up to Govt to assist children with Muscular Dystrophy to take part in UK trial - Doyle calls for urgent action

 

 

Today (Thursday) in the Dáil, Fine Gael Wicklow Deputy Andrew Doyle called on the Minister for Health to introduce legislation to allow for funding of Exon Skipping Trials in England for people with Muscular Dystrophy.

In response to a query on the subject, the former Minister of State at the Department of Health, Jimmy Devins, said it was not possible under existing legislation, although there was all-party agreement for urgent support for enabling legislation.

"Because of the debilitating way Muscular Dystrophy affects the children with this disease, it is vital that any action to support them is taken as soon as possible. As the Director of Muscular Dystrophy Ireland said, 'time is not on our side'. Participation by the Government in these trials in the UK would cost €1.5 million and could make a significant difference to the lives of people affected."

After Tánaiste Mary Coughlan stated today that she was not aware of any plans to introduce enabling legislation, Deputy Doyle has called on her and the Department to delay no longer but take immediate action to allow these patients to benefit from a research programme that could change their lives for the better.

Original Press Release here: http://www.finegael.ie/news/index.cfm/type/details/nkey/34553/pkey/653



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