International Spina Bifida Newsletter Launched (Reprinted from www.ifglobal.org)
Dear friends,
Here is the latest news from IF. We are currently working within IF on an IF-Knowledge Centre, to share all the information and knowledge on Hydrocephalus and Spina Bifida worldwide with you. Please, keep sending us all your ideas and experiences so we can make this knowledge available to the rest of the world. Also, from 2 - 5 September 2004 we will organise our world conference in Oslo. Keep the date free in your agenda.
Pierre Mertens
IF President
Dutch Ambassador visits Paz
On the 20th of September the Dutch Ambassador to Peru, Mr. P Schellekens, visited Paz Holandesa. The Ambassador showed particular interest in the joint project whereby Paz Holandesa and IF treat and support children with Spina Bifida and Hydrocephalus. A visit was made to the Paz Policlinic where professional follow-up is guaranteed. The group also went to the Goyeneche Hospital where a Dutch operating team visits twice a year to perform hundreds of surgeries. They combine this with training of local professionals. Paz Holandesa is a Dutch initiative by individuals like Marjan van Mourik combined with the efforts and involvement of Peruvian professionals. Mr Schellekens expressed his appreciation for what has been achieved for so many disabled children in such a short period of time. His special interest also went to the shunting programme IF has developed with Paz Holandesa.
Life in colours
The "Life in colours" seminar (8/11/03) is a project in Finland by young adults who have a desire to organize a seminar that depicts their life. Young adults with Spina Bifida and/or Hydrocephalus and the coordinator, Carola Sandberg, have been working together on this project. It will be a national seminar and a great effort has been spent on the information that will be given to the people attending the seminar. The programme consists, among other things, of a panel discussion with "life we have in common" as a topic. Parents can also take part in the seminar. The young adults want to support parents in enhancing their children's self-esteem.
A new Finnish brochure
A new brochure on BackUp-activities has been printed. In the brochure you can find information on social support when working with people with SBH and the family support. We hope that the brochure will increase the exchange of opinions among people in a common situation. The brochure has been sent all the national University hospitals. In 2003, a support person education was organized for the first time ever in Finland. Seven adults with Spina Bifida and Hydrocephalus took part in it.¾
Annual report 2002
The annual report 2002 was accepted by all members during the General Meeting in Brussels. It is now available online. You can read it by clicking here. A word version is also available, just sent an email to if@wanadoo.be and we will send it to you.
News from Brazil
Brazil is a large country with almost 170.000 inhabitants. Rio de Janeiro accounts for more than 14.500.000. We do not really know how many people in Brazil have a physical disability. However it is easy to understand that the majority of these people are in need of adapted means of transportation. This in itself is a big problem for the disabled. In Rio de Janeiro, few subway stations have wheelchair accessibility and there are no regular adapted buses running in the city. Although a law exists, unfortunately citizens' right to public transport is denied simply due to the financial interests of the bus owners. According to them the cost to adapt the vehicles does not justify the number of users. For disabled people, to cope with public politics still is a struggle. They continuously ask themselves: don't we exist? This disturbing news came from the President of the Associao de Espinha Bifida e Hidrocefalia do Rio de Janeiro. For more detailed information on this organisation, go to http://www.aebh.kit.net
Workshop in Tanzania
On 20-21-22 November 2003, IF will organise a workshop on the management of the neurogenic bladder in children with spina bifida and spinal trauma. This workshop will he held in Moshi, Tanzania. The aim of the workshop is to introduce the management of the Neurogenic bladder through clean intermittent catheterisation (CIC) and intravesical oxybutinine therapy in all the IF projects. This workshop will be an opportunity for our parents in Africa to exchange their experiences and learn from each other. For more information, please contact the IF office atifdc@wanadoo.be ¾
Call for a correct image
Olga De Wit, president of the Spina Bifida group of the Netherlands, and IF's president Pierre Mertens reacted in a joint press release to the television show 'Vinger aan de Pols', where parents (who decided not to have an operation for their child) gave a unjust image of Spina Bifida and Hydrocephalus. They did not blame the parents but called the media to give a correct image of the quality of life with a disability referring to Toulouse resolution. ¾¾Read More
New logo for IF
IF is proud to present you our¾federation's new logo. The BLD group helped IF in 1995 by designing a new and more professional look. Time goes¾by and IF needed a facelift and therefore we knocked on the door of our old BLD friend Jim Begg. Jim introduced us to his partners Patrick De Greveleer, Chantal Blaas and Caroline Toutounji. They agreed to have a look at it and developed this new logo as well as a general leaflet and a more realistic house style.
Disability and Development cooperation
As the work on disability and Development cooperation needs a European dimension, IF started a closer cooperation with The European Disability Forum (EDF) on this theme. There is a need to ensure that disability is recognised throughout EU Development cooperation policy and IF will represent the specific needs of people with Spina Bifida and Hydrocephalus. Els De Clercq will represent IF in the development cooperation meetings, aiming to develop closer contacts with European Commission Development DG, European Parliament as well as the International and European Development and disability organisations and networks.
|
