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



Currently rated 3.5 by 8 people

  • Currently 3.500001/5 Stars.
  • 1
  • 2
  • 3
  • 4
  • 5

Tags: , , ,

Government Lobbying | News

Duchenne Muscular Dystrophy Lobby Day

by Admin 4/5/2008 11:36:00 AM

 

On April 9th 2008, Duchene Ireland and Muscular Dystrophy Ireland will convene the 2008 National Muscular Dystrophy Annual Lobby Day in Buswells Hotel on Kildare Street, Dublin 2, next to the Dáil (Irish Parliament).

Members of Duchenne Ireland and Muscular Dystrophy Ireland (MDI) will come from all corners of Ireland to discuss matters of critical importance to Muscular Dystrophy sufferers. Top of the agenda for Duchenne Ireland will be the funding support for the "Exon Skipping" trials in the UK.

 Nearly three years have passed since Duchenne Ireland parents met with MDI and Government officials to try and secure funding for the "Exon Skipping" trials in the UK and still no money has been sanctioned to support this life saving clinical trial, that is the best hope for DMD boys and girls that has ever been seen.

The interesting twist to this Lobby day, is that the TDs are on the side of the boys and girls, with many of them voicing their support for the lobby day and booking their place well in advance of the day. So remember 12 noon in Buswells Hotel - Be their and voice your support to save these kids lives. And Remember - It's Free Admission !

Duchenne Muscular Dystrophy is 100% fatal at present - This does not have to be the case - support Duchenne Ireland and Muscular Dystrophy Ireland now and tell your TDs to support the Exon Skipping Trials in the UK.

Make the difference - Voice your support:

 

April 9th 2008 - Buswells Hotel - Kildare Street, Dublin 2, @ 12 noon.

 

Directions to Buswells - 9th April 2008 @ 12 Noon

 

 



Currently rated 1.0 by 2 people

  • Currently 1/5 Stars.
  • 1
  • 2
  • 3
  • 4
  • 5

Tags: , , , , ,

Events | Government Lobbying | News

Families reject Irish Government washing of hands of boys with Duchenne Muscular Dystrophy

by Admin 3/22/2008 2:59:00 PM
The Irish Independent from Mon Mar 17, 2008 carried the story of two Irish families determined not to let the Irish Government away with just ignoring our kids battle against Duchenne Muscular Dystrophy (DMD). Well done to all involved, National papers are where we need to be.....

Anyone not currently working on raising awareness of Duchenne and would like to get their message across should contact myself and we can work with our current media contacts and MDI to keep the awareness high for Duchenne in the lead up to the April 9th Meeting.

http://www.independent.ie/national-news/families--in-funds-appeal-to-help-save-children-1319559.html


Currently rated 1.0 by 1 people

  • Currently 1/5 Stars.
  • 1
  • 2
  • 3
  • 4
  • 5

Tags: , , , , , ,

News

Powered by BlogEngine.NET 1.3.0.0
Theme by Mads Kristensen

Sign in

Recent Duchene Post Responses

Don't show

Calendar

<<  September 2010  >>
MoTuWeThFrSaSu
303112345
6789101112
13141516171819
20212223242526
27282930123
45678910

View posts in large calendar

Disclaimer

The opinions expressed herein are individual bloggers own personal opinions and do not represent Duchenne Ireland's view in anyway.

© Copyright Duchenne Ireland 2010

Sign in

Locations of visitors to this page