When our sons were first diagnosed in 2012 we were lead to believe that there was little or no hope of any treatments becoming available for them. As you may have read, we were advised to ‘Go home and love your children’. Whilst there is still a long way to go in relation to developing integrated pathways of care for people living with the disease, things have improved somewhat. That said, it is essential to understand that Duchenne Muscular Dystrophy is a catastrophic, complex and life limiting disease.
However, the progress has been made over the past two years in the field of translational research for Duchenne is rather extraordinary and we have huge hope that this next year will yield further gains for the community. Our main challenges are the cost of the research; the time it takes and then the ability to access the clinical trials and in time the drugs.
We have started the process of working in collaboration with clinicians, scientists, pharmaceutical companies, biotech companies, regulators, legislators, registered charities and other key stake holders but we appreciate this is the beginning of a much longer process.
In 2014 we held the first ever International Duchenne conference in Croke Park in Dublin. We are determined to ensure that people living with Duchenne, in the Republic of Ireland will have the opportunity to access potential treatments and clinical trials, in the same way as they do in other parts of Europe.
We are forever grateful to the people who continue to support us in finding solutions in Ireland.
We shall keep you updated with our progress as time goes on.
You can read about the conference here:
Duchenne Muscular Dystrophy– Finding Solutions in Ireland’
Voluntary Group hosts International Conference on Duchenne Muscular Dystrophy in Croke Park in June 2015.
An International conference on Duchenne Muscular Dystrophy (DMD) is being held in Croke Park on 24th June 2015. The conference titled ‘Duchenne Muscular Dystrophy– Finding Solution in Ireland’ – is being organised by the The Join Our Boys Trust. The Join our Boys Trust was established in 2014 to provide funds for three Roscommon brothers who have Duchenne Muscular Dystrophy (DMD). Nine year old Archie and twins George and Isaac, who are four, are the only children of Paula and Padraic Naughton from Roscommon. Currently DMD has no treatment; DMD has no cure. The ultimate aim of The Trust is to help provide funds to find a treatment, ideally a cure, for all children diagnosed with this catastrophic disease.
The conference is open to health professionals, particularly Neurology, Respiratory and Cardiology Paediatric specialists, along with General Practitioners, Public health nurses, Occupational therapists, Physiotherapists and Social Care Workers. Any health professional dealing with childhood muscular dystrophy will find the day educational as will parents caring for children with DMD, who themselves are experts by experience. Other voluntary or statutory agencies with an interest in DMD and rare disease will also find the day of value.
Some of the foremost researchers and clinicians on DMD in the world are speaking at the conference. They include Professor Dame Kay Davies, Oxford, Professor George Dickson, London and Professor Kate Bushby from Newcastle, England. Dr. Paddy Murphy, a Respiratory Physician from London will speak on managing respiratory problems in children with neuromuscular disease, and Professor Eileen Treacy and Dr. Denise McDonald will speak on the Irish situation for children with Duchenne Muscular Dystrophy.
Speaking on behalf of The Join Our Boys Trust, Dr. Anne Jeffers, explains how Duchenne Muscular Dystrophy affects between 1 in 3,500 and 1 in 6,000 boys and 1 in 50 million girls born each year. At present there is no treatment and no cure, however this conference will show the advances in research into finding cures and the benefits of having a dedicated service for children with neuromuscular diseases. “Health professionals, families living with DMD and politicians should attend this conference. The speakers all bring a positive attitude to the management of neuromuscular diseases and support that positivity with examples of good practice and advances in gene therapies.”
Paula Naughton, mother of Archie, George and Isaac refers to ensuring the Join Our Boys Trust can increase awareness of Duchenne Muscular Dystrophy, and ensure children in Ireland can have the same access to standards of care and access to research trials as children in other countries.
Approval for CPD points has been applied for from the RCPI and ICGP, INMB, and professional colleges of allied health professionals.
Duchenne Muscular Dystrophy – Finding Solutions in Ireland Schedule