Following the success of Duchenne Ireland's first grant call that is currently funding three active international research projects into therapies for Duchenne, we are delighted to announce our 2010 grant call. It is anticipated that €200,000 will be allocated for this grant call in this round of funding and we welcome applications that target some or all of this funding. All research project applications will be assessed by the Duchenne Ireland  scientific advisory panel and final decisions on funding allocations are expected within 6-8 weeks of the closing date for receipt of applications. The application form can be downloaded below. The closing date for applications is 31st May 2010. Duchenne_Ireland_grant_application_form_2010.doc (672.00 kb)

Action Duchenne in partnership with Professor Kate Bushby and Dr Tracy Willis at Newcastle Centre for Life have developed a new Accident and Emergency file for patients living with Duchenne and their families.

Most people living with Duchenne never need to go to an A&E unit however if your child or young person is unwell and needs to go to hospital this file contains vital information that you can pass on to the A&E team. It will enable them to have information on how to contact your own specialist consultants and your most recent test results.

Many doctors and consultants in A&E might have little specialist knowledge of Duchenne. Information in the file on recent lung function and heart checks for example are vital in emergency situations. Information on the drugs you are taking is also crucial to emergency teams. Simply fill in all your personal details and ask your own clinician to complete all the sections in the file.

Then keep the file handy and take it with you whenever you go into hospital.

The form can be got on the Action Duchenne website or can be got by clicking the link below.

http://www.actionduchenne.org/AEfile

For your own copy and so that we can send you updates please fill in the form below. Our office will send you your free copy.

On the most glorious of mornings in 2009, over 30 cyclists and 20 supporters stood side by side with National University of Ireland researcher Dr. Karl McCullagh and Fine Gael TD Padraic McCormack at the launch of the inaugural "Tour Duchenne" charity cycle event in support of Duchenne Muscular Dystrophy Research. The cycle took participants from Galway to Maynooth, two university towns active in Duchenne Research. The cycle was superbly aided by the Gardai who kept the routes clear for the speedy peletons as they made their way across Ireland in the sunshine.

The two day event saw the cyclists restart in Athlone on a glorious Sunday morning. 105 KM ahead of them was Maynooth. Eager to start the group flows out of Athlone onto the old Dublin road.       Part of the second peleton spreads across the road, supported by the Red Cross and support vans and cars from the Tour Duchenne "Convoy"...     Standing Strong Together - An "Elite" fighting force! together in the fight to fund research into Duchenne Muscular Dystrophy. Some of the more eager cyclists (and party goers) that graced this years "Tour Duchenne", lend each other support even before the cycle had begun! Same time next year then lads...   For more images of the Tour and upcoming video footage of the "Tour Duchenne 2009" visit the Duchenne Ireland Facebook Page

Cyclists accross Ireland are getting ready for the inaugural "Tour Duchenne" charity cycling event on Saturday 12th and Sunday 13th of September 2009. The cycle arranged to fund research into Duchenne Muscular Dystrophy will take the participants from the National University of Ireland in Galway to Maynooth. Both Galway and Maynooth have Irish research centers linked to Duchenne research. The event will end in the newly renovated "Mantra" bar in Maynooth Town Center. Duchenne Ireland, organisers of the event are encouraging everyone on the route to go out and support the cyclists in this cross Ireland challenge. Duchenne Ireland supporters will be fundraising for the cycle in the towns en route and would be delighted to received support from members of the public and our supporters accross the country. Be on the look out for our yellow "Tour Duchenne 2009" cycling jerseys. When asked why so many yellow jerseys, John Gorman organiser of the event said: "Everyone supporting Duchenne Research was a winner and deserved a yellow winners jersey". Kickoff of the cycle is on Saturday the 12th of September at 9am from the National University of Ireland, Galway. 100% of proceeds go directly to Duchenne Ireland's "Duchenne Muscular Dystophy Research Programme", which last year alone was involved in supporting five different research projects with many more planned for this year. See the Tour Itinerary here

The 2009 Flora Ladies Mini Marathon was awash with Duchenne Ireland T-Shirts this year as more than 100 participants took part to support Duchenne Muscular Dystrophy Research. A truely fantastic effort by all involved. Some scenes from the event show how the Duchenne Community is building up momentum in Ireland as more supporters see the benefits of supporting research.

The next national event is the "Tour Duchenne" cycle event which takes place on Saturday the 12th and Sunday 13th of September. The cycle takes riders right across Ireland from Galway NUI to Maynooth NUI. To register please contact John on 083-3348634. Be quick as registration will soon close. See our events page for more details.

 

Thursday the 21st was the day the Dail turned to a debate on Duchenne Muscular Dystrophy. Fine Fail introduced their motion and it was carried 64 to 58 votes against a counter motion raised by Fine Gael and Labour.

The government motion did not address any of the items Duchenne Ireland have been raising over the past 4 years namely Adoption of Standards of care for Duchenne, registration of Ireland as a clinical trial site for Duchenne and adequate research funding for Duchenne, despite two votes in favour of such funding by the committee for health and children in the last few years.

The following counter motion was filed by Fine Gael TDs Joe McHugh and Andrew Doyle on behalf of Duchenne Ireland:

“That Dáil Éireann:

Noting that:

• there are currently at least 150 families affected by Duchenne Muscular Dystrophy (DMD), in Ireland today;
• DMD is the worlds leading lethal childhood genetic disease;
• there is no cure for this disease at present resulting in an average life expectancy of late teens and early twenties;
  

Recognising that:

• Duchenne Ireland has raised over €300,000 nationally through a vast range of fundraising events which is to be allocated to translational DMD research;
• research, led by Professor Kay Ohlendieck, National University of Ireland Maynooth, has led to a promising new approach in the treatment of Muscular Dystrophy;
• in 2008 the Joint Oireachtas Committee on Health and Children unanimously voted in favour of supporting funding of Duchenne Research;

Calls on the Government:

• to ensure that in the context of the deteriorating economic and fiscal environment that the National Disability Strategy will be implemented in full and that funding is invested to provide the essential health and community support services for people with disabilities, including those with Muscular Dystrophy and DMD;
• to prioritise adequate funding for Muscular Dystrophy and DMD Research through the Health Service Executive, and the Health Research Board, so to provide sufficient supports for sufferers but also to employ the most promising and innovative research strategies through the clinical trial process and to ensure that sufferers have access to these trials;
• to ensure there is a Care and Clinical Trial site in Ireland that is registered with the Treat-NMD clinical trials coordination centre and also to ensure that the new DMD Standards of care are fully implemented in this country.

— Joe McHugh, Denis Naughten, Andrew Doyle, James Reilly, Kieran O'Donnell, Dan Neville.

[19 November, 2008]

Duchenne Ireland would like to thank the following TDs and Minister who spoke during the 90 minute debate in Dail Eireann last Thursday (21st May) Minister Moloney, James Reilly, Dan Neville, Denis Naughten, Jan O'Sullivan, Caoimhghin O'Caolain, Eamon Scanlan, Andrew Doyle, John Perry, Pat Breen, Niall Blaney, Jimmy Devins, Paul Connaughton, Joe McHugh and John Cregan.

Although the vote did not go our way we hope that Minister Moloney will carry through with the commitments he made to Duchenne Ireland on Thursday "Last November the issue became clear to me and the Tánaiste asked me to talk about meeting with the group and I intend, further to this debate, to meet with members of that group. I accept that request. I am not meeting them for the sake of it. That is not the position. It is a meeting to bring clarity"

We also would like to thank Muscular Dystrophy Ireland for using the event to promote their important agenda.  It is essential that the momentum gathered is maintained 

The full text of the Dail Debate can be found at the following link: www.kildarestreet.com/debates/?id=2009-05-21.145.0

FG TDs secure agreement of party Whips to debate important motion

Fine Gael Deputies Joe McHugh TD and Andrew Doyle TD were informed this afternoon by Government Chief Whip, Minister Pat Carey TD, that Dáil Eireann will debate a motion on Duchenne Muscular Dystrophy (DMD) on May 21st.

Duchenne Muscular Dystrophy is a degenerative muscular disease, affecting Irish families including a number in Donegal. The disease results in an average life expectancy of late teens/early 20s, and currently no translational research and no clinical trials for DMD are being carried out in Ireland

Last November Deputies McHugh and Doyle published a motion on Dáil Éireann’s Order Paper, and today the Government agreed to facilitate this motion on May 21st.

The news comes as a welcome step for 160 Irish families afflicted by the disease, and to the charitable organisations which have raised significant funds for research into the disease.

Deputy Joe McHugh TD said:

“Last November my colleague Deputy Andrew Doyle (Wicklow) and I published a motion on the Order Paper on this subject, and this morning’s development in Dáil Éireann is significant.

“On 21st May Dáil Eireann will debate the motion. I will be advocating the motion, and I will be targeting something achievable and realistic, within existing funding budgets. We are all aware of the current budgetary constraints and we will have to work within that framework.

"There are promising research strategies in place in other countries for Duchenne Muscular Dystrophy, which accelerate drugs through the clinical trial process, including in the UK.

Deputy Doyle said:

“We must ensure that Irish sufferers have access to these trials, because currently the life expectancy for Irish sufferers is far below the life expectancy of sufferers in the USA and in Great Britain.

“I will propose that the Irish Government helps to fund health research that is currently being conducted in the UK, in conjunction with the Health Research Board (HRB) and other agencies of expertise.”

Derbhile Dromey (Irish Medical Times) writes that some patient-led organisations, such as Duchenne Ireland, are stimulating research into medical conditions.

Patient-led organisations are playing a powerful role in stimulating research into rare diseases that would not otherwise attract funding. Organisations representing people with Duchenne muscular dystrophy (DMD), for example, which affects 160 families in Ireland, are stimulating significant research into the condition. Duchenne Ireland was set up by the parents of boys with DMD. Though only in its infancy, it negotiated a deal through UK organisation Action Duchenne to self-register with UK registries that select subjects for clinical trials. It also secured an agreement from the Tánaiste to facilitate a debate about DMD in the Dáil — a step towards permanent Government funding.

Duchenne Ireland gives an international focus to its research efforts. It has created a €200,000 grant, entirely through its own resources, which it has promoted through the research network Treat Neuro-Muscular Disease (Treat-NMD). “We wanted to move things forward,” said John Gorman of Duchenne Ireland (DI). “We don’t want an effort where it’s research for research’s sake. A lot of research in Ireland is university-led and may not be as translational as we’d like. We wanted to concentrate directly on research, because we knew that without that push, nothing was going to happen.”

International researchers

The grant call is being peer-reviewed and DI has set up a research committee of international researchers. “We’re looking at work where questions linked to clinical trials will be answered. The key was to make sure that it was as professional as possible. We’re not scientific people, but we want to be facilitators. Everyone agrees that there may not a cure or a therapy that will give function back to the boys, but things can be done on a step-by-step basis that can improve their quality of life. The research has to be applicable to this generation.”

Extract from Full Article kindly from Irish Medical Times