US Congress passes reauthorization of the MD-CARE Act --- Irish Government Does Nothing...

by Admin 9/28/2008 5:31:00 AM

Congress Passes MD-CARE Act Reauthorization

From our friend in the USA:

US Congress has passed legislation, and is sending the bill to the president for signature. In just a few short days, the bill was amended and passed by the House Energy and Commerce committee, then passed by the full House of Representatives, amended and passed by the United States Senate, and finally by the full House for a second time. An unbelievable sequence of events that really began with the bill’s introduction back in the first week of February.

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.



Currently rated 1.7 by 9 people

  • Currently 1.666667/5 Stars.
  • 1
  • 2
  • 3
  • 4
  • 5

Tags: , ,

Government Lobbying | News

Donegal Man Gets Naked For Duchenne Research

by Admin 8/25/2008 9:43:00 AM

 

The Competition

From Monday the 11th of August, One person each day will be selected to take a short trip on the bus from home to work. You will only be naked on the bus and will get on the bus fully clothed and get off fully clothed…

After 15 trips the person with the most money raised for charity wins all the prizes on the bus which include a holiday for two to Crete !

Our Contestent

John McConnell from Buncrana will be on the Naked Bus for Duchenne Ireland on Friday the 29th August at 11am. He will be picked up from his house in Buncrana and travel Naked on the bus around Innishowen to his office at the Inish Times, on main street Buncrana.

John is hoping to raise a huge amount for Duchenne Ireland's national fundraising drive and will be collecting at local shops and businesses in the vicinity. Please support his "brave" efforts, and give generously. He really does deserve this holiday !

The Cause

All the money raised by John will go towards Research into therapies for Duchenne Muscular Dystrophy.

If you believe you have a similar calling to help our charity, then please email us at info@duchenne.ie and we will be more than delighted to help. As you can see, there are "no limits" to what people will do for your boys and girls with Duchenne Muscular Dystrophy.

For more information and a sneak peak at the previous contestents, check out the radio station running the event here

The Result

John collected a fantastic €1776 for Duchenne Ireland and put Duchenne Research in the eyes and ears of the people of Buncrana and further afield. Well done John your a credit to the Inish Times.

Please check out the video below to see how far John Really went to help boys with Duchenne Muscular Dystrophy.

If you think you can too can help fund raise for "real" therapies for these boys, then contact us on info@duchenne.ie or ring John Gorman on 083-3348634. Every little bit helps.

 

 

   



Currently rated 1.7 by 52 people

  • Currently 1.653846/5 Stars.
  • 1
  • 2
  • 3
  • 4
  • 5

Tags: ,

Events | Fundraising

Night at the races

by Jimmy Mooney 8/6/2008 11:52:00 AM

The Seaview Tavern, Malin Head's most northerly lounge bar will host a Night at the Races on Saturday night in aid of Duchenne Research.  There will be 11 races,  the last one being an Auction Race.  Local businesses have again come out in force to support our fundraising efforts and have sponsored races on the night.  Horses for the races have been bought and named and horses will be available to buy and bet on, on the night.  The night starts at 9pm (Malin Head time), and hopefully will gather a good crowd on what will be the last Saturday of the Festival at the Top for 2008.



Currently rated 2.0 by 4 people

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

Tags:

Events

Govt refuses to fund life-saving muscular dystrophy trials for Irish children

by Admin 7/30/2008 2:28:00 PM
30
Jul 2008
Govt refuses to fund life-saving muscular dystrophy trials for Irish children - McHugh

Govt refuses to fund life-saving muscular dystrophy trials for Irish children - McHugh

Fine Gael National Press Office Press Release

 

 

 

 

 
Leinster House Contact: Joe McHugh TD
Dublin 2 Mike Miley Donegal North East
Ireland 01 6184254  
 
Wednesday July 30th 2008
 

Govt refuses to fund life-saving muscular dystrophy trials for Irish children - McHugh

 

Fine Gael Deputy Joe McHugh has today (Wednesday) slammed the Government for its refusal to fund UK clinical trials into Duchenne Muscular Dystrophy (DMD), the fatal genetic disorder that affects 150 Irish children.

The best hope for these children lies in participating in the UK trials but the Fianna Fáil-led Government refuses to provide the small amount of funding necessary and refuses to find its way around regulations it says prevents the funding being allocated according to Deputy McHugh.

"The contribution from the Irish Government to these trials was agreed at £1.5 million but now the Government has refused to provide it on the basis that it cannot fund health research in the UK.

"Duchenne Muscular Dystrophy is a genetic condition that causes premature death by the age of 18 to 22. There is no effective treatment or cure for the condition which mainly occurs in boys.The Government's attitude that it cannot fund UK Research, and that it will not find a way around regulations governing this, is a slap in the face to parents of the 150 Irish children suffering with DMD, particularly since no such trials exist in Ireland.

"The UK trials are known as the 'Exon skipping trials' and similar trials have been carried out in Holland, with very successful outcomes. These trials offer fresh hope to parents who had previously been told that nothing could be done to help their children. The total amount needed for these trials is only €1.5 million - a small amount in the overall context of the Exchequer - and families in my area have already raised €175,000 through charity events.

"Time is not on the side of these children, as evidenced by a letter I received from one parent last week who stated that time and money are the only things standing in the way of her son receiving the treatment he badly needs. It is inconceivable that the Government cannot, or will not, find a way to help children such as these and fund the trials.

"I, along with my Fine Gael colleagues, have raised this issue on several occasions but have been ignored or 'fobbed off' by the Health Minister and Finance Minister. This week I wrote to the EU Health Commissioner to urge her to intervene and find funding as it is clear that the Irish Government's response has been one of inaction and ignorance. The Government would not even find a mechanism to fund the charity being established by the families, Duchenne Ireland instead of directly funding the UK trials and instead provided €9,000 of National Lottery funding to Muscular Dystrophy information day.

"To say this response is an insult is a gross understatement when so many lives hang in the balance."
Ends

Original Press Release: http://www.finegael.ie/News/index.cfm/type/details/pkey/653/nkey/34991



Currently rated 1.6 by 45 people

  • Currently 1.6/5 Stars.
  • 1
  • 2
  • 3
  • 4
  • 5

Tags: , , ,

Government Lobbying | News

Duchenne Ireland Launches First Research Grant !

by Admin 7/29/2008 12:31:00 PM

 

Following an intensive national fundraising campaign and a massive influx of support from local communities accross Ireland, we has been able to successfully launch our first ever "Duchenne Ireland Research Grant".

The funding opportunity is targeted at research projects directed towards finding a treatment or potential cure for Duchenne Muscular Dystrophy. Approximately €200,000 will be allocated in this round of funding and applications are welcome for some or all of this amount.

Researchers accross the globe have been made aware of the grant thanks to the kind people within the TREAT-NMD Network, who have communicated the grant issue to their network of researchers.

The deadline for receipt of completed forms is 15th October 2008. All research project applications will be assessed by our scientific advisory panel and final decisions on funding allocations are expected within 6-8 weeks of the closing date for receipt of applications.

For further details download the application form here.

We will continue to actively fundraise and challenge ourselves to create new ways of bring awareness of duchenne to the people of Ireland and bring funding directly to researchers who desperately want to end the needless suffering of Duchenne children.

Join our fundraising initiatives or be creative and "do your own thing !" for Duchenne Ireland to ensure that our next research grant will be just around the corner.

The countdown to our next research grant has begun...

Duchenne Ireland



Currently rated 1.6 by 48 people

  • Currently 1.557293/5 Stars.
  • 1
  • 2
  • 3
  • 4
  • 5

Tags: , , , ,

Events | News

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

 



Currently rated 5.0 by 2 people

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

Tags: , , ,

Events | Fundraising

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. 



Currently rated 1.9 by 13 people

  • Currently 1.923077/5 Stars.
  • 1
  • 2
  • 3
  • 4
  • 5

Tags: , , , ,

Events | Fundraising

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 1.6 by 107 people

  • Currently 1.626169/5 Stars.
  • 1
  • 2
  • 3
  • 4
  • 5

Tags: , , ,

Government Lobbying | News

Charity Begins At Home - Fundraising Effort For Brothers With Duchenne

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


Currently rated 1.5 by 64 people

  • Currently 1.546876/5 Stars.
  • 1
  • 2
  • 3
  • 4
  • 5

Tags: , , ,

Events | Fundraising

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.



Currently rated 1.4 by 11 people

  • Currently 1.363636/5 Stars.
  • 1
  • 2
  • 3
  • 4
  • 5

Tags: , , , ,

Government Lobbying | News

Powered by BlogEngine.NET 1.3.0.0
Theme by Mads Kristensen

Sign in

Recent Duchene Post Responses

Don't show

Tags

Calendar

<<  May 2016  >>
MoTuWeThFrSaSu
2526272829301
2345678
9101112131415
16171819202122
23242526272829
303112345

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 2016

Sign in

Locations of visitors to this page