Read about conferences in the Spina Bifida and Hydrocephalus world
The International Federation for Spina Bifida and Hydrocephalus has launched, during this conference, the IF Knowledge Network, an internet-based, quality controlled Q&A-database on Spina Bifida. This innovative website and social platform has been developed the past two years and is ready for intensive testing and feedback.
Mr. Luis Quaresma, as host of the conference, was the first registered user.
The nearly 200 participants from over 20 countries – from Australia to Zambia – were welcomed by Mr. Luis Quaresma, president of the Portuguese Association for Spina Bifida and Hydrocephalus, the organizer of the international conference.
Mr. Pierre Mertens also welcomed the participants to the 19th International Conference of the International Federation for Spina Bifida and Hydrocephalus. He states that people with Spina Bifida and Hydrocephalus do not want to be reduced to their medical deficit. They want to smile just like anyone else and they give the world a real and honest smile. That is, not coincidently, the theme of the conference.
Mrs. Maria Marça of the Health Ministry welcomed the participants in the name of the High Commissioner of Health and the Minister of Health. Apologizing the High Commissioner and the Minister, she states the importance and the role of organizations of people with a disability.
The IF award 2008 is going to Dr Rob de Jong, who also delivered the keynote speech. Dr de Jong stresses that, although people with Spina Bifida and Hydrocephalus have a lot of issues to deal with, every time he sees a child with Spina Bifida and Hydrocephalus, he sees a normal human being with problems, just like he himself has problems. Dr de Jong was, and still is, angry on the medical nonsense that is told about Spina Bifida and Hydrocephalus. The parents get a picture of their newborn which is absolutely negative and incorrect. He gives an overview of children in his clinic. Even the most severe form of Spina Bifida does not make the child suffer. Dr de Jong has researched the issue of pain in newborns with Spina Bifida, concluding that when the baby suffers from pain, it can be alleviated easily. The criteria used in the Groningen protocol are incorrect, it is incompatible with human rights and it is unclear in whose interest these decision are.
The first set of photographs arrived from Zjuul Devens. A first impression of the conference can be seen on the Photos page.
Each year, the International Federation for Hydrocephalus and Spina Bifida (IF) presents the IF Award to an individual or organisation in recognition of the special contribution they have made to the service of people with disabilities in general or to people with Hydrocephalus and Spina Bifida in particular.
The award itself is a bronze statue. It was designed and created for IF by the Belgian artist Pierre Mertens to replace the previous statue created by the Swedish artist Mr Olovson. The current IF Award is a statue representing an Etruscan woman with a hole in her back and abdomen. It is representing both ‘the pregnancy in danger by prenatal diagnoses’ as the ‘disability’ represented by IF. The view through the body represents hope. It is a focussed way of perceiving the world through the hole in the back of people.
This year’s award is given to Dr Rob de Jong, paediatric neurosurgeon, on account of his scientific contributions concerning the debate on active euthanasia and his critical comments and publications on this issue. He has published a scientific paper covering pain and unbearable suffering by babies with Spina Bifida. His thesis: children with Spina Bifida are not suffering unbearably and pain can be managed.
Mr. Douglas Sorocco and Mrs. Thelma Cloake were elected as two new board members of the International Federation for Spina Bifida and Hydrocephalus. Mrs. Cindy Brownstein and Mrs. Victoria Sandoval de Lara resigned as board members.
The 19th IF World Conference on Spina Bifida and Hydrocephalus will be held in Lisbon, Portugal from 6 to 9 June 2008. The theme of the conference is “Drawing Smiles – towards adulthood” and will touch topics such as transition, growing up with these conditions and quality of life. Among the speakers will be IF president Pierre Mertens (Belgium), Dr. Helen Healy (Canada), Dr. Kachinga Sichizya (Zambia), Dr. de Jong (the Netherlands) and Dr. Carla Verpoorten (Belgium). You can find more information at the conference website. The conference programme (Word-document) can be downloaded here. Through this blog we will keep you informed about the conference. We will add interviews, articles and photographs.
