Remarks by President McAleese at the World Annual Congress of the Int. Federation of Spina Bifida
Remarks by President McAleese at the Opening of the World Annual Congress of the International Federation of Spina Bifida
Dia dhíbh ar maidin a chairde. Is mór on ónóir agus pléisúir dom bheith anseo inniu. Míle bhuíochas díbh as an gcuireadh agus an fáilte a thug sibh dom. I’d particularly like to thank George Kennedy, Chief Executive of Spina Bifida Hydrocephalus Ireland, for the kind invitation to officially open this, the twenty-first World Congress of the International Federation of Spina Bifida and Hydrocephalus.
I’m particularly delighted that the International Federation chose Ireland as the host venue for the twenty-first World Congress and we are delighted to welcome the Federation as it ‘comes of age.’ As well as being a great privilege and honour for us to host this milestone event, it is also a tribute to the excellent work and high reputation of the Irish association. We have delegates here today from almost thirty countries – to each one I extend the traditional Irish welcome – céad míle fáilte, one hundred thousand welcomes and it is a special pleasure to welcome Pierre Mertens, the President of the International Federation for Spina Bifida Hydrocephalus.
Somewhere today a family is coming to terms with those words, Spina Bifida, for the first time. The joy of a pregnancy is about to be overwhelmed with worry and fear for the future health of a child. In this moment of transition from being people with no experience of Spina Bifida to people who are going to have a lifelong relationship with it, you are central to the journey they are about to undergo. Your organisation, through its members and its distilled experience offers them a support network through which they enter that world of people living with Spina Bifida and Hydrocephalus, their families and carers, healthcare professionals and leading international researchers across a range of disciplines and jurisdictions - all of whom have deliberately chosen to work together to share learning and experience so that our understanding, treatment and management of Spina Bifida and Hydrocephalus will be the best it can possibly be.
A familial spirit of solidarity and friendship characterises our local organisation and the International Federation. You came to Dublin to enhance the work, to search out and build on best practice, to interrogate all the pockets of knowledge and experience which need to be probed to ensure that babies, children, teenagers and adults with Spina Bifida and Hydrocephalus have access to the best treatments, advice, support networks, opportunities and lives that are lived to their fullest potential.
We have a saying in Ireland, giorrian beirt bothar, two shortens the road. None of us can live another’s life for them but we can be with them on life’s journey and our presence can be an essential tool in helping to ease the burdens of that journey for those who face illness or disability. In this audience are members and representatives of organisations whose primary mission it is to accompany people affected by Spina Bifida and Hydrocephalus – right from the moment of diagnosis, through birth, childhood, adolescence and onwards into adulthood. You are on hand to support those expecting parents whose unborn child has just been diagnosed, to advise on helping siblings adjust to having a baby brother or sister with Spina Bifida, to guide fashion-conscious teenagers with Spina Bifida who are seeking stylish orthopedic footwear, to counsel and assist adults on the additional challenges they may face in employment, training and further education. Your advocacy encourages the research which year after year improves treatments and services and brings real hope into so many lives. You educate the public about Spina Bifida especially making us aware of the importance of folates in the diet of women of childbearing age and the needs of those living with Spina Bifida and their carers. Most important of all, as this Congress highlights, you insist on reminding us of the giftedness and talents of those with Spina Bifida or Hydrocephalus and how they daily transcend disability to shine in a massive array of ways and careers – from leading neurosurgeon Dr Timothy Brei to the well-known Eastenders actor David Proud – there is a roll call of men and women with various forms of Spina Bifida who have made a formidable, personal imprint on the world around them.
A key strength of the Spina Bifida and Hydrocephalus communities around the world is the personal commitment to volunteering made by your members. They each bring their unique personality and character into the service of local and international organisations and they create a strong, dynamic resource through their communal efforts. Today I want to thank all of them for the spirit of generosity which allows your organisations to function and to flourish. Thanks to them Spina Bifida Hydrocephalus Ireland have forty years of development to be proud of and the International organisation has reached its 21st birthday. These organisations are still young enough for their founders to remember what it was like before they existed – how lonely the journey, how unknown and unknowable the path ahead. Today the story is very different and that there is now both real hope and effective care is down to you. To all of you who have made this work your vocation, whether as volunteers or as professionals, I offer a big thank you.
I hope that at this Congress by sharing your individual wisdom deeply and generously and listening attentively as those from other perspectives share with you, that a new level of insight and enthusiasm will develop – enough to guide our next steps to a better world for those with Spina Bifida Hydrocephalus. When you have that done – enjoy Dublin and its many delights!
Go raibh míle maith agaibh go léir.