Ireland Lobby 2011 - DeanWidd - Stopwasting - Action Duchenne - Fighting for a cure for muscular dystrophy

Ireland Lobby 2011
08 June 2011

Wednesday 8th June saw the second Action Duchenne lobby at Stormont in Northern Ireland sponsored by MLA Robert Swan.

Families and supporters gathered on the day to highlight issues by lobbying MLA's to demand an end to the continued serious under-funding for research and medical care and support in Northern Ireland for Duchenne and Becker Muscular Dystrophy.

Eilidh Macpherson, Campaigns and Advocacy Manager for Action Duchenne, who arranged the lobby met with myself and other families and supporters at the Northern Ireland Assembly in the morning. From here we made our way to the Members Dining Hall where some parents had the opportunity to meet for the first time and discuss the positive and negative experiences they have and continue to have in Ireland.

Prior to the meeting commencing at 2pm, which was covered by GMTV Ireland, various MLA's took the opportunity to come in and talk to families. There was a clear indication that the awareness and knowledge of Duchenne is very little when talking with the MLA's and this opportunity gave families the chance to discuss the difficulties they have faced and raise the profile of the condition and the charity.

After speaking with parents and supporters on the day MLA Mike Nesbitt took the time to have his picture taken which he used along side an article he wrote about the day which can be read here: http://mikenesbitt.co.uk/2011/06/08/action-duchenne/

During the afternoon parents Andrew McClean, Marina Lupari and Janet Bailie gave accounts of their personal experiences of having a child with Duchenne. All 3 parents are at different stages and have experienced different positives and negatives which they explained.

Professor Mike Shields also gave an account about the work he has done to help establish good practise in the field of Respiratory care in Northern Ireland. He highlighted how ensuring good practise and care is essential for those living with Duchenne like that provided in Denmark.

Pauline Hunter, Family Care Adviser, also spoke in the afternoon about her experiences of meeting families and trying to help them with issues related to housing adaptations, wheel chair services, disability living allowance acceptance forms, etc. Pauline advised she is aware of some 60+ families associated with Duchenne and together we will ensure these families don't miss the opportunity of being on the DMD Registry.

We are all aware that there is a need and requirement to have a centre for excellence in Ireland. Some young men no longer can make the journey across to Newcastle to receive the high quality standards of care needed for such a complex condition. However we are also aware that before a centre of excellence can be established the foundations of reliable care needs to be addressed first.

There are experts in various fields spread across Ireland that can help establish this required foundation and form multi disciplinary teams as seen in Newcastle and London. The problem is networking and co-ordination of those with expertise and getting them to work and communicate together while looking to fill in the gaps where there is no person or team in place.

Andrew McClean who many of you met at the lobby is keen to get a group of parents and supporters together to help Action Duchenne raise awareness and funds for Duchenne while also continue to address matters with health care and parliamentary meetings. I know many of you highlighted you would like to get involved and help make this happen. Let's ensure this drive and determination continues and we move forward in making a difference. It's time to stop wasting!

I would like to thank everyone who took the time to come along to the lobby, parents, supporters, MLA's, speakers on the day and Eilidh for helping bring together this lobby and MLA Robert Swan for sponsoring the lobby.