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International Federation for Spina Bifida and Hydrocephalus
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International Federation for Spina Bifida and Hydrocephalus - Homepage

Introduction

IF's mission

IF's goals

Members

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Sponsoring

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About IF

Structure & Board

General Structure

IF is an International NGO according to Belgian law. The General Meeting elects the Executive Board biannually but the General Meeting is held every year. External auditors control and approve the financial statements.

IF staff

 

At the IF office in Brussels, Lieven Bauwens (Coordinator) and Els De Clercq (Project Manager Development Cooperation) work together with financial adviser Mr. Gert Van Bavel. Several volunteers are helping IF to achieve its goals.

The IF Board meets 2 times a year during 3 days over weekends. These meetings are held in different countries and connected where possible with local meetings and study visits. Between the Board meetings, working meetings are organised when necessary.

 

Board Members
Mr. Pierre Mertens, President
Ms. Eli Skattebu, Vice-President
Mr. Teije Dijk, Treasurer
Mrs. Thelma Cloake
Mrs. Renée Höglin
Mr. Jon Burke 
Mr. Luis Quaresma
Mrs. Maria Cristina Dieci 
Mr. Douglas Sorocco

 

Staff
Ms. Els De Clercq
Mr. Lieven Bauwens
Ms. Renée Jopp

 

 

Mr. Pierre Mertens, President

Belgian nationality. Profession: Visual Artist and Psycho-therapist.
Pierre Mertens was born in Antwerp in 1953. He married in 1977. In 1978 his first child, Lies, was born with Hydrocephalus and Spina Bifida and one year later Pierre and his wife started the Belgian Association for Hydrocephalus and Spina Bifida. They have two other children, Leen and Maarten, and are foster parents to Roxanne, Fadie, Shana and Lynn. For ten years Pierre Mertens was President of the Belgian association, stepping down in 1989 when Lies died after a shunt operation. At that time he was elected Vice-President of IF. In 1994 he started PHOS (Platform Handicap and Developing Country work) in Belgium, the umbrella organisation of non governmental organizations and organizations of people with disabilities addressing disability issues as they relate specifically in/to developing countries. In 1995 he was elected President of IF. In 2001 he published 'Liesje' a book about his daughter with Spina Bifida. This book was translated into French, English and Norwegian.
In 2002 he was asked to become European Ambassador for the Environment.
“Many goals have been achieved during my presidency.  All this was only possible due a good cooperation and active involvement of my Board and the network of volunteers who are active in IF.” 

Ms. Eli Skattebu, Vice-President

Norwegian nationality. Profession: Director of the Norwegian SB/H organisation
Eli Skattebu, 44 years old, has Spina Bifida herself, and she has been the chair person of the Norwegian association for 8 years. Now she is employed in the Norwegian association in a 50 % post.  Earlier she has been working in kindergarten, and as a doctor secretary. “IF is an important umbrella association for the national associations. Through IF the national associations have a big network all over the world. For a rare diagnosis like ours this network is very important for sharing experiences and knowledge.  IF is working on important subjects I am interested in, like the adult work and the work for the development countries.” Eli would like to work to get adult groups more active in the international association. People with SB/HC are a new group in the world’s population and the growing adult group has needs, for example regularly habilitation, which many countries can not yet offer them. Eli has also been involved in the African project the last 8 years.

Mr. Teije Dijk, Treasurer

 

Dutch nationality. Profession: Director of the Service for Education, Sports, Culture, Social Welfare and Public Health
In addition to his job, he is actively involved in voluntary work. Teije Dijk and his wife have three children. The youngest, a boy who is now 15 years old, was born with Spina Bifida and Hydrocephalus, so Teije is personally involved in the world of disabilities. For several years he has been a member of the Board of BOSK, the Dutch umbrella organisation for people with motorial disabilities. He has been the chairman of the SBH-division and is still a member of it. He leads a committee for renewing and reorganising Bosk. He is also involved with the Dutch Council of Disabilities. As a member of the IF Board, he has special interest in matters regarding ethics.
In his professional life, he is responsible for providing services to people with disabilities. He studied law and economics and did several management educational seminars.  He likes (long distance) walking and biking, music and nature.
”I am motivated to be active for people with disabilities and especially for people with Spina Bifida and/or Hydrocephalus because their position in society should be improved in many ways. Complete inclusion and equal rights should be standard, but there is still a long way to go. We should keep fighting for that ideal.”

Mrs. Renée Höglin

Swedish nationality. Profession: a freelance writer and journalist
Renée has a son with Spina Bifida and Hydrocephalus. She has written three books on disability topics, among them one called “Have I Got A Chance With You?”, which is now being published in Japan, plus hundreds of articles and leaflets on issues of disability. She has been a member of RBU (the Swedish umbrella organisation for parents of children with mobility problems) since the mid 70’s, a Stockholm Board member from 1995 – 2004 and a national Board Member since 2003. She is a member of the Spina Bifida & Hydrocephalus Committee of the national RBU together with Eva Toft and Karin Berggren. She has also been the editor of a regional RBU member magazine, Hört & Hänt, until spring this year.
She wants to contribute to the IF Board with her media knowledge and communication skills and her long experience as a parent of a son with SBH.
“I would like to be engaged in the research and treatment of people with Spina Bifida and/or Hydrocephalus in member countries and particularly in Africa.”

Mr. Jon Burke

UK nationality. Profession: User Involvement Coordinator
Jon has Spina Bifida and arrested Hydrocephalus, as a result of this he is a full time wheelchair user. He has 20 years experience of working in disability issues. This includes time working for both statutory and non-statutory organisations, specialising in supporting the development of disabled people and disability organisations. Examples of this include: the development of a youth section of a national disability organisation, the setting up and project managing of an IT training organisation for disabled people which was involved in a variety of EU funded programmes and more.
He was a founder member of Your Voice, the disabled service users section of Asbah and he is the current Chair of the group. His parents were involved in the setting up of a local association for Spina Bifida and Hydrocephalus the year after the national association was set up.
He gained a degree in Politics and History in 2002 after studying for a number of years as a mature student. 
“I would particularly like to support the IF Boards work in developing services for people with Spina Bifida and/or Hydrocephalus as well as helping to get more disabled service users involved in contributing to and running their own services. “

Mr. Luis Quaresma

Portuguese nationality. Profession : member of ASBIHP
Luis is an adult with Spina Bifida and he has worked for ASBIHP for the last 15 years and he is the President of the Board. During the last two years he has been part of the development of several projects that will contribute to the improvement of the quality of life of people with Spina Bifida and/or Hydrocephalus. He was also a member of the CNOD (National Council for Disability) Board for 6 years and he represents ASBIHP in the Governmental Department for Disability (SNRIPD).
He believes it is important to increase the variety of countries in the Board and it is also important to help the African countries so that their health care services can be improved.
He also would like to trigger the interest of the young adults with Spina Bifida, so they can become more involved in the life of IF.
“Because I am an adult with Spina Bifida, I think it is important to be involved in the life of the Federation and I think that with my experience (as someone with Spina Bifida and also as an active member of ASBIHP during the last 15 year) I can contribute to the good work that IF has being done.”

Mrs. Maria Cristina Dieci

Italian nationality. Profession: Employee at the Province Association of Surgeons and Dental Surgeons of Piacenza
Cristina is the mother of a girl with Spina Bifida. She knows well about the problems of the parents, the families and the people suffering from Spina Bifida since she knows them and personally experiences them everyday.  Her daughter’s birth has made her grow; it contributed to her personal development and influenced her choices. Her priorities in life have been and still are inspired by her. The lack of answers, the need to know better, together and through the others, the need to talk with other parents who are in the same situation and above all the need to feel active for her daughter’s disability made her get closer to the association, it gave her the opportunity to understand its meaning and appreciate its importance.
The Association is a priviledged place, based on sharing, where you can acknowledge, express and talk about the rage, the pain, the resentment without fear or sense of guilt…but above all it is the right place to find answers to unfulfilled needs, a practical help. It is vital to work in order to extend the network of contacts among families, help and support them, guide them…so that they feel welcomed. Over the years Cristina has developed awareness, experience, knowledge and the certainty that she has to and can dedicate herself more to voluntary work. Her personal motivations and strong “social” desire to commit to something so important as providing answers to those who not always have the tools to do it contributed to make her accept in 1998, the proposal to become the President of GASBI, and she still holds that position. GASBI is the Association that represents people suffering from Spina Bifida and their families; it works at national level by coordinating the different regional centres, in order to offer practical services to our families and give voice to our needs and our children’s needs.
"There are several reasons why I decided to apply for the IF Board. First of all the certainty to offer a responsible and continuous commitment; secondly, because I would like to extend my commitment from the national to the international level – I think it is important to act also at this level – and because I would like to make my multi-annual experience available to IF’s common and shared interests."

Ms. Els De Clercq

Belgian nationality. IF Coordinator Development Co-operation
Els De Clercq was born in Belgium in 1974. She has always been very actively involved in youth organisations, completing several courses in leadership. She was a childrens' leader for different age groups from 1991 through 1998. She attended several painting classes and continues both an active and passive involvement in art. In 1992 she began studying psychology at the University of Gent and completed these studies in 1997 with a thesis on addiction. During her studies she trained in different branches of psychiatry for several months. On completion of her studies, Els worked for one year in an organisation that specialised in raising funds for projects in developing countries, where she became interested in disability and developmental work.

 

Mr. Lieven Bauwens

Belgian nationality. IF Project manager 
Lieven Bauwens spent a year in Iowa, US as an exchange student after his secondary education. He finished his studies in architecture in 2001. After that, he studied a Master in General Management and European Human Resource Management at the Vlerick Leuven Gent Management School for which he stayed three months in Denmark and Iceland to complete a master thesis on performance indicators for a non-profit organisation. Lieven has 2 brothers and 1 sister, of whom one brother, 19 years old, has Spina Bifida. After having worked for a project sponsored by the European Commission and the Flemish government concerning employment for long term unemployed and low skilled people, Lieven became a manager for a regional centre for social economy, consulting starting businesses. Lieven is also active in an exchange organisation.

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