A special tribute night was held on Saturday 22nd of November in Buncrana, Co. Donegal to remember Darren McDonagh from Buncrana who passed away this year. Darren had Duchenne Muscular Dystrophy, and despite it's challenges, the fantastic video of his life that was played at the tribute night really showed how well he had overcome these challenges at home, in school, and in his communittee supported by his family and many friends who turned up in great numbers on the night.

The Night was a fantastic success with music by the Drifters keeping everyone dancing well in to the small hours of the morning. All Proceeds from the night were kindly donated to Duchenne Ireland for translational research into Duchenne.

Darren's parents spoke about how Darren had wanted to ensure that other young boys with Duchenne would have a chance at a better future by funding research into Duchenne.

John Gorman from Duchenne Ireland praised the people of Buncrana for their fundraising efforts during the year and support at events such as the tribute night. He outlined how Duchenne Ireland was working both nationally and internationally to bring about therapies for this generation of boys with Duchenne and that this work was only made possible through such communitee support.

Duchenne Ireland is delighted to announce that is has become a member of the Treat-NMD network of excellence for Neuromuscular Diseases around the world.

TREAT-NMD is a network for people with neuromuscular diseases and professionals working in the field. It aims to advance diagnosis and care and develop new treatments for the benefit of patients and families, working closely with scientists, healthcare professionals, the pharmaceutical industry and patient groups around the world.

Duchenne Ireland is committed to fostering the details outlined in the Treat-NMD Member Charter within Ireland and wherever we represent Children with Duchenne internationally in the aim of facilitating change in the natural course of Duchenne.

We look forward to all of our supporters continued help to ensure we have the resources to continue reaching out to similar international networks of excellence and researchers to drive for effective therapies for Duchenne.

Congress Passes MD-CARE Act Reauthorization

From our friend in the USA:

Most importantly, this victory is for the boys and their families. Passage of the legislation will continue to build upon the recent progress we have made, continue to drive important research at the Wellstone Centers, keep our issue at the forefront of attention at NIH, CDC, HHS, and other agencies, and continue to provide hope to one day soon find the cure and END DUCHENNE!!!!

Click here to read the press release

We congradulate the US people on working tirelessly to get this bill passed and we acknowledge that their funding of international research and best practices from this legislation will benefit our Irish boys with DMD just as much as US boys. DMD does not see international borders, it does not see politics, race, religion. It is indiscriminate, and so should Irish Funding for DMD research.

It's with disbelief that we in Ireland stand today in a paralel universe to our friends in the US . Our government has neglected DMD boys for far too long. When will Duchenne Muscular Dystrophy boys have legislation brought to pass in Ireland that will ensure therapies will continue to be researched and clinical trials continued to be supported for an eventual cure for our boys. What is Irelands Strategy for bringing an end to Duchenne?

We have, for more than just this week been in a recession in the DMD community with respect to Government action on this disease. It has been four years since our initial campaign to get the Irish government to fund DMD Research. Now is the time to face up to the hard facts that the Irish Government is responsible for finding therapies for boys with Duchenne Muscular Dystrophy, not the UK, not the USA alone but Ireland too as equals in this obligation. In a time of unprecedented number of pharmaceutical companies within Ireland and a constant urge by the government for inward investment into industry in Ireland, it is a poor representation of the Irish Government that nowhere in Ireland anyone is working on any legislation to ensure similar MD-CARE Act benefits are rightfully given to Irish boys with Duchenne.

We call on the Irish government to face up to their responsibility towards these boys and recognise that they have an obligation to fund research into rare diseases like Duchenne Muscular Dystrophy and that unanimous agreement from the Committee for Health and Children to fund DMD research (as was agreed earlier this year) should be the only requirement to have this acted upon. A Committiee is of no use unless it's recommendations are acted upon. Fund the correct DMD organisations or centers for excellence with adequate funding now into diseases like Duchenne to ensure research projects of internationally peer reviewed science are funded.

We call on the Government to act now and to see how Ireland can progress DMD research "internationally" to find therapies for our boys.

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.
"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

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.