October 2nd 2010 - Ireland

Duchenne Ireland Charity Funds Cutting Edge Personalised Research

Duchenne Ireland issues a call for funding applications each year and there is considerable interest from research groups at home and abroad in obtaining financial assistance to perform much needed translational research into Duchenne Muscular Dystrophy. Decisions are made quickly by the charity’s research committee following peer review by international experts to ensure that important work can proceed without unnecessary delay. The charity, in it’s first grant call, contributed more than €200,000 to research projects that offer hope of promising breakthroughs in terms of treatments for this generation of boys.

Since it was set up a few short years ago, Duchenne Ireland has been involved in funding projects in Europe and elsewhere and it is hoped that such involvement can be continued. This will be possible only through additional fund-raising efforts which will help to ensure that money will be available to keep these important project going. The types and nature of the projects are very varied but in all cases the emphasis is on translational research that could have short or mid-term impact.

The latest round of funding has seen Duchenne Ireland commit another €180,000 towards a project that hopes to deliver results using a technique called exon skipping to overcome some of the negative effects of Duchenne Muscular Dystrophy. The project aims to identify the potential of exon skipping therapy for boys with Duchenne at a personalised level.

Numerous clinical trials are underway internationally for Duchenne therapies and Irish boys with Duchenne are currently missing out on the potential of these trials including upcoming “exon skipping” trials due to the lack of a clinical trial centre for Duchenne in Ireland. Ireland at present is one of the only countries in Europe that does not have a Duchenne Clinical Trial Centre. Duchenne Ireland is actively working with the Government and national Clinicians on a proposal to establish such a clinical trial centre for Duchenne in Ireland.

Funding for Duchenne Ireland research is generated from charity events such as this weekend’s (Saturday Oct 2nd) Tour Duchenne 2010, taking place at 9am at the Aquarium, Strand Road, Bray.
Tour Duchenne Is Duchenne Ireland’s annual charity cycle to raise funds for Duchenne Muscular Dystrophy research. Each year cyclists get ready for a super cycle route within Ireland. This year it takes them on the “Beach Tour” from Bray Seafront to Brittas Bay and back (approx 85 km.

The cycle is facilitated by the Gardai, the Red Cross, Bray Town Council and is sponsored by local businesses. This is a great day to show your support for the charity within the towns on the route (see http://www.duchenne.ie for route itinerary).

About Duchenne

Duchenne is the most common fatal genetic disorder diagnosed during early childhood, affecting approximately 1 out of every 3,500 boys and 20,000 babies born each year. Duchenne causes loss of muscle function and independence. There is currently no cure for Duchenne, but much research is currently underway to find an interim therapy that will help delay the progression of the disease until a cure is found.

66% of all duchenne cases are inherited from the boys mother. 33% of Duchenne cases diagnosed are not inherited but cause by environmental factors. This means that any boy can be diagnosed with Duchenne. Boys are usually only diagnosed between the ages of 3 and 5 years of age.Current research is working on replacing the missing dystrophin in children with Duchenne. Clinical trials are already underway, but we need more direct funding to this research to ensure it progresses faster than the disease.

About Duchenne Ireland

Duchenne Ireland is a patient organization and registered Irish Charity (CHY 18197) established to facilitate funding translational research into Duchenne Muscular Dystrophy. Duchenne Ireland is affiliated with numerous patient groups and clinical, research and support networks for Duchenne Muscular Dystrophy. Duchenne Ireland works internationally to rapidly advance research into Duchenne and welcomes organization, parents and supporter who believe they can help to forward progress in this research.

The aims of Duchenne Ireland is to raise awareness of Duchenne Muscular Dystrophy at local, national and government level. Our objective is to raise funds which shall go directly to the researchers and clinicians who we believe have the best chance of developing improved therapies which will benefit this generation. We are also working towards achieving an infrastructure which is on a par with best international practice.

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.

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.