Blog Archives
World Duchenne Awareness Day
Please Share and Invite your friends! Friday the 7th of September marks World Duchenne Awareness Day 2018. The Trust has supported this occassion since it commenced in 2015. Previously, we have supported the International Duchenne Community by releasing 79 Red…
Duchenne Croke Park Conference
Ensuring Irish Duchenne Patients have access to treatment conference will be held in Croke Park this October 6th. National and international experts include Proferror Michael Barry Dr Elin Haf Davies Professor Keith Foster Dr Declan O’Rourke Christopher Jones, (Mitchell’sJourney) We…
SSE Airtricity -Dublin City Marathon Video
Good Morning. We hope you are well. We know you are busy. We know you have your own worries and problems. If you can spare a few moments please watch this video and share with your circle. It would help…
World Duchenne Awareness Day
Celebrating World Duchenne Awareness Day September 7th 2017 in Roscommon Town This day marks the 4th International World Duchenne Awareness Day. On this day the International Duchenne Community stands united to raise awareness of this catastrophic disease. We use it…
Young Hero – Archie Naughton
Archie was honoured to be chosen for their ‘ Young Hero Award 2017’. He is extremly grateful to every one who voted for him. He had a lovely day with his family and friends. Young Hero – Archie Naughton Archie…
Join Our Boys Grant to Solid Bioscience
We are so happy to tell you that The Join Our Boys Trust recently awarded a €100,000 Grant to Solid Biosciences, in the hope it will help them accelerate part of their gene therapy programme. We are only able to…
‘Our children were going to die and there was nothing we could do about it’
‘Our children were going to die and there was nothing we could do about it’ In November 2012, Paula and Padraic Naughton were told their three sons, Archie, George and Isaac, had Duchenne Muscular Dystrophy, a fatal disease The last…
Mini Marathon 2017
We appreciate you are busy. We appreciate there are thousands of good causes that require support and funds. We also appreciate that so many of you understand our utter desperation and grief. This year we are aiming to ‘recruit’ 500…
Access to Treatment Translarna
For the past year The Trust has been engaging with key stakeholders in relation ensuring that once treatments become available for children and adults with Duchenne they can be accessed immediately. Unfortunately at present this process is complex and frustratingly…
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