| Structure and Board |
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General Structure
IF is an International NGO according to Belgian law. The General Meeting elects the Executive Board biennial, 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 (Secretary General), Katalijne Van Diest (Coordinator Development Cooperation), Ellen Lens (IF Child Help), Renée Jopp (Communications officer) and Tom Rottinghuis (Coordinator European Projects) 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. Eva Toft Mr. Erwin Calgua Mr. Luis Quaresma Mrs. Margo Whiteford Mr. Douglas Sorocco Staff 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.” 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.” Mr. Lieven Bauwens Belgian nationality. IF Secretary General 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.
Dutch nationality. IF Communications Officer
After assisting IF for almost 2 years as a volunteer, Renée joined the IF staff in november 2008. Before joining IF she was involved in public education as secretary of a regional parents association. She also worked as a volunteer in a regional assocation of kindergartens, handling the management tasks of the organisation. In her spare time Renée is active as a freelance photographer. She also brings with her experience from her former administrative jobs and knowledge about website building. Supporting IF's motto "Knowledge is the key to a better life", she aspires to gather and distribute as much information as possible about the subjects that matter to IF and its target group. To make sure that the knowledge reaches everybody that can benefit from it, she also aims to expand IF's network. Renée works as a teleworker from her home in the Netherlands.
Dutch nationality. IF Coordinator Development Cooperation
Katalijne van Diest completed her studies in Medical Biology at the University of Utrecht in The Netherlands in 2001. During these studies she spent some time performing field work in Indonesia and was involved in developing training programs for an international non-profit organization. She worked for 6 years as a program/project manager for an international, EC-funded non-profit organization - a partnership between European and African countries - and in the pharmaceutical industry. After several years working in the profit sector, she has decided to go back to an international non-profit setting, where priorities are put where the need of the end-user is, and where all parties involved work for that same common goal; to improve the lives of others. As Coordinator Development Cooperation at IF she hopes to be able to add value to this goal by supporting the organization and its projects in their activities and help them professionalize and grow. In The Netherlands she was involved in the start-up of an organization setting up a children's home in Nepal. In July 2008 she moved to Brussels, Belgium.
Dutch nationality. IF Coordinator European Projects
Prior to joining IF Tom worked in the European Parliament for one of the leading MEPs on the issue of anti-discrimination. Previously he worked as Political Officer for ECOSY, the European umbrella of Socialist youth organisations, and as a free-lance trainer on non-formal education projects all over Europe and in the Middle-East. During this time he specialised in issues like gender equality, anti-discrimination and inclusion. Since childhood Tom has been active as a volunteer within several human rights and youth organizations which gave him a good understanding of the needs of volunteer-based organisations. As part of his studies in Public Administration he did research at a British think-tank and worked for half a year at a human rights organisation in Jerusalem. As IF Coordinator EU affairs and CoE Tom aims to build upon IF’s already strong reputation within the European institutions and the Council of Europe.
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