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Verein: AFS Interkulturelle Begegnungen e.V.
Projekt: International Federation for Spina Bifida and Hydrocephalus
Bewerbungsende: jährlich
Status: Stelle gestrichen
Laufzeit: ab Mitte Februar 2010 - 6 Monate
Sprache im Projekt: keine Angaben

Diese Stelle ist nicht mehr verfügbar!

Bewerbungsbeginn für die Abreise im Sommer eines Jahres ist immer der 1. September des Vorjahres. Bewerbungsschluss ist 30. September.
Bewerbungsbeginn für die Abreise Anfang eines Jahres ist immer der 1. März des Vorjahres. Bewerbungsschluss ist der 30. März.

* Very good English or Dutch language skills required, any other language is an appreciated asset * Having some experience with disability issues (personal connections, studies,…)
* Willing to work flexibly (flexible hours - due to volunteer members / flexible content,…)
The volunteer needs to be willing to work in a small team (3 staff members), willing to communicate to IF staff, to be cooperative.

The nature of the work requires some interest in research and content development, which requires a certain level of abstraction. It is also important to know that as umbrella organisation, IF does not directlty deal with individuals with a disability (only on limited occasions such as seminars or conferences), IF does not provide services to people with a disability. So a volunteer should not expect - for example - to work as a physiotherapist with children with a disability. IF works a lot with computers, nearly all communication is virtual. The participant needs to be somewhat computer literate and able to work with Microsoft Office. AFS, the coordinating host organisation, strongly believes in the intercultural learning aspect of an EVS-experience. Therefore, the volunteer will be living with a volunteer host family, as we believe this is the best introduction to Flemish culture and a great opportunity to integrate in the local community. Volunteers should be willing to share in the host family's daily life (spend some free time with them, occasionally join the family on activities outside the house, eat together, give a helping hand in the household... ) and should be motivated to live with and learn about Flemish people of different ages and opinions. They should also be willing to adapt to the local eating habits. On the other hand, we guarantee a family that is interested to learn about the volunteer's culture and background and that respects his/her values and beliefs. Living in a host family is an excellent opportunity for both the volunteer and the family to broaden their cultural horizons! Candidates who clearly prefer to live independently or together with other volunteers, are advised not to apply for this project.


The Organisation:

IF is a world-wide network of organisations of people with Spina Bifida ('open back') and Hydrocephalus ('water on the brain') and their families. IF aims to improve the quality of life of people with these impairments and to increase primary prevention (i.e. prevention of these disability by promoting the intake of folic acid).
IF's profile is: the IF Knowledge Network (on Spina Bifida and Hydrocephalus), as IF is not a big organisation, but the network of hundreds of people worldwide, who all work for the same cause: improving the life of people with Spina Bifida and Hydrocephalus and preventing the disabilities by primary prevention.

IF has 32 full member organisations: regional or national Spina Bifida and/or Hydrocephalus organisations in Argentina, Australia, Austria, Belgium, Brazil, Denmark, Estonia, Finland, France, Germany, Guatemala, Ireland, Italy, Japan, Luxembourg, the Netherlands, Norway, Peru, Poland, Russia, Portugal, Scotland, Slovakia, Spain, Sweden, Switzerland, Turkey, United Kingdom and the United States. IF has 50 affiliated organisations worldwide with whom it has regular contact.

IF has own projects running in Kenya, Malawi, Tanzania, Sudan, Uganda and Zambia. IF provides shunts and knowledge on the impairments to China, Congo, Ethiopia, Nigeria, Peru, Guatemala, Philippines, Senegal, and Vietnam. IF cooperates with large NGO's to serve the target group as good as possible (Handicap International, CBM, Cure International, Paz Holandeza).

IF is a board member of the European Disability Forum and PHOS (Flemish platform for disability and development cooperation).

IF represents its members at the United Nations (where it holds the consultative status with the Economic and Social Council), at the European Commission, at the Council of Europe (where it holds the participatory status), at the World Health Organisation.

The central office is staffed with 2 employees, one coordinating the projects in Eastern Africa and developing the project work (Mrs Els De Clercq) and the other managing the organisation and developing fundraising activities (Mr Lieven Bauwens).

Regular activities include: external and internal communication, project work in Africa, lobbying (sensitization), project development, content development, fundraising,…

The board of directors is composed of: Pierre Mertens (president - Belgium), Eli Skattebu (vice-president - Norway), Teije Dijk (treasurer - the Netherlands), Renée Höglin (Sweden), Luis Quaresma (Portugal), Ines Orella (Spain), Cindy Brownstein (US), Jon Burke (UK) and Victoria Sandoval (Guatemala)

Spina Bifida and Hydrocephalus

Spina Bifida ('open back') is one of a group of birth defects known as Neural Tube Defects (NTDs), which occurs within the first 25 days of pregnancy and affects 1 to 2 in every 1000 live births. In addition to an obvious gap in the skin covering the spine, the vertebrae and the nervous system are damaged, leading to some degree of paralysis. Most children and adults have problems with bowel and bladder control. Spina Bifida occurs as the result of lack of absorption of folic acid before and during the first weeks of the pregnancy: food quality can influence this, though other preventative measures may also be necessary. Spina Bifida cannot be cured, though medical interventions mean that many people with Spina Bifida now live into old age and have a good quality of life.

More than 85% of children with Spina Bifida also have Hydrocephalus ('water on the brain') or develop this at a later stage. Cerebro-spinal fluid (CSF) is produced continuously inside each of the four spaces or ventricles inside the brain. CSF normally flows from one ventricle to the next, then out across the outside of the brain and down the spinal cord, where it is absorbed into the bloodstream and re-circulates. When the drainage pathways are blocked at any point, the fluid accumulates in the ventricles inside the brain, causing them to swell, resulting in compression of surrounding tissue. Drainage of the fluid with a device called a shunt or a natural bypass (ETV) is needed.

There are many other causes of Hydrocephalus besides obstruction of the normal CSF pathways caused by abnormal brain anatomy as is the case with Spina Bifida. Among others, it can also be the result of meningitis, tumours, cysts, trauma or intracranial bleeding which occurs more frequently following premature birth.

Working environment

IF is -not coincidently- located in Brussels, Belgium, home to many European institutions. Due to the nature of topics and geographic operation, the European institutions often are the prime (communication) partner. IF is also the worldwide umbrella of regional and national organisations of people with the impairments, but all but 8 or 9 (whether Turkey is included or not) are European. Brussels as the European capital therefore is a logical choice as seat.

IF is a small organisation with a lot of ambition, but limited resources. The working environment is broad-scoped and fast-paced. Opportunities are identified and grasped as fast as possible. IF does not have any structural unrestricted funding (besides limited membership fees) and is primarily project based. Of course, transparent bookkeeping and financial arrangements are key. All accounts are audited by a registered auditor.

The Project:

The president and the board of directors are all volunteers (i.e. they are not remunerated by IF, two of the board members works for IF's members, i.e. they are professionals) and IF members carry the costs of a board member (eg. transport costs, lodging, …). The board has 5 people with the impairments. 3 are parents of a child with Spina Bifida and Hydrocephalus.

The president invests a lot of time in the organisation and is closely involved with the operational side of the organisation. He represents IF in the board of the European Disability Forum and its human rights committee.

Other tasks performed by volunteers are translation (from and to English, Dutch, French, Italian, Spanish) and fundraising actions.

The (medical) experts (dr Carla Verpoorten, dr. Ben Warf, Sophie Blancquaert, …) are all volunteers. Being a small organisation, IF is looking for an all-round volunteer, willing to invest time in helping out at the IF office (support of the voluntary president, coordinator and development cooperation staff member, communication, some limited administration) and developing content (human rights, sensitization on prevention matters, identifying partnership).

IF understands that the tasks of a volunteer can change according to the experience obtained in the project as well as the background of the volunteer.

IF is a truly global organisation and believes strongly in volunteering (a lot of its resources). The activities where volunteers can truly contribute can be divided into two types:

Communication and administration
These tasks can be performed the first weeks as an introduction to IF, a small organisation that can use help on the following subjects:
- Administration of the organisation (content and information management, database development,…). Filing and archiving.
- Part of office management: practical planning of meetings, providing supplies, …
- Internal and external communication: writing and coordinating the newsletter (easy existing format + frame), maintaining website (via easy to use admin-console), letter campaigns to donors, et cetera.
- Ad-hoc elements, such as fundraising events.
- Relation with members, depending on the interest and native language of the participant.

Content development
IF has many issues to deal with on different levels, and that can be taken at heart by a volunteer depending on his/her background:
- Ethics and human rights: IF is very active in the human rights committee at EDF (the European Disability Forum) and makes the effort to communicate it to the outer world. This means: visiting Members of European Parliament, doctors, organising events, et cetera. The concrete development can be discussed (as part of own project).
- The IF Knowledge Network: IF has cooperated with the Univerity Groep T in Leuven, Belgium to develop an innovative approach for quality controlled information on the Internet in the two disabilities. This model, effectively programmed during 2006, needs to be implemented and finetuned, in cooperation with experts (doctors, programmers,…). The launch of the online database in the global network will be in 2007.
- Own project is possible. Following the interest and competences of the participant, an own project can be developed.

Learning points
Volunteers working for IF will be able to experience an international working environment, in the fast moving not-for-profit world. Depending on the expertise of the volunteer, they can improve in specific content related items (which will always be in cooperation with volunteers or IF-staff).

A specific project with specific objectives will be defined depending on the profile of the volunteer. Within the frame agreed up front, the volunteer gets autonomy to develop own accents and working procedures. A certain autonomy is required due to the small scale of the organisation (which makes that communication is very easy - as everyone shares the same office).

IF works according to a regular employee schedule, but very flexible (if there are language classes, other activities, et cetera). A working package of 35 hours can be foreseen and agreed. The week usually starts with a short staff meeting, to align agenda's and plan ahead. As we will define a concrete project according to the competences and interests of the volunteer, we will agree time allocation at that moment.

The office is in the center of Brussels (300m from Manneken Pis / Grote Markt), usually open according to regular office hours. A work place with computer is, of course, available.

Language classes will be provided by the coordinating organisation AFS.

Project’s Aims:

The International Federation for Spina Bifida and Hydrocephalus is the umbrella organisation for people with a disability and is therefore open to everyone. Projects can be adapted to the possibilities of whoever and on the moment it is agreed, but needs to be within the possibilities of a small NGO.

Reference number: 2006-BEFL-44