Consultative status special category with Economic and Social Council of the United Nations

Consultative status, Council of Europe

IF ANNUAL REPORT 2002
'You are my world'

IF

Cellebroersstraat 16

B-1000 Brussels

Tel: +32 (0)2 502 04 13

Fax: +32 (0)2 502 11 29

E-mail:

Web-site:

Bank Account: KBC bank – Boekenborglei 2 – B 2900 Schoten – Account Number: 409-7069511-01 – Swift Code: KREDBE22

TABLE OF CONTENTS

  1. Introduction ‘You Are My World’
  2. What is Spina Bifida – what is Hydrocephalus?
  3. What is the International Federation for Spina Bifida and Hydrocephalus (IF)?
  4. Structure of IF
  5. The IF Board of 2002
  6. Consultative expert team
  7. IF’s mission and goals
  8. IF is a member-oriented organization
  9. Exchange of Knowledge and Information
  1. IF-Knowledge Centre
  2. an interactive web site
  3. monthly newsflashes
  4. Annual Conference:
  1. List of Conference Titles.

II. You are my world, Poland 2002

  1. Proposed Future Conferences under negotiation
  1. Ethics Project
  2. Prevention and food fortification
  3. The IF projects in developing Countries 2002
  1. Aim of the project of Early Detection, Treatment and Rehabilitation
  2. Partners and Projects
  3. Results for 2002
  4. Surgical Procedures
  5. Parent groups
  6. Neurogenic bladder management
  7. Endoscopic Third Ventriculostomy (ETV) and training
  8. Training at all levels
  9. Research
  10. Awareness
  11. Funding
  12. Looking forward
  1. The IF Award
  2. Financial Report
  3. Thanks to the Donors

1. Introduction

‘You Are My World’ could have been the words of love from a young mother to her new born baby who is totally dependent upon her for survival. For the baby at that time, the mother is his entire world.

A good mother knows that over the years she can change this total dependency into a confident relationship where independence can grow.

She will support her child as long as is necessary but will work to empower, and encourage independence as soon as possible. Mothers of children with Spina Bifida and/or Hydrocephalus generally do this very well. I see children age 6 taking care of their own catheterisation and going to their mothers to put their head in her lap and both enjoying this.

These good mothers involve their children and inform them about all problems related to their impairment in a language they understand, giving them the opportunity to have an influence on the treatment and decisions that have to be made.

‘You Are My World’ was the theme of the 2002 IF conference on inclusion in Poland.

In Poland we had these good mothers in mind. They know that society is not always ready for total inclusion of people with disabilities. Therefore they arm their children with independence. Inclusion requires strength from people with a disability. Associations for Spina Bifida and Hydrocephalus contribute to the empowerment of parents and children. But inclusion needs the involvement of society too. The conference served to empower as well as inform the people with Spina Bifida and/or Hydrocephalus in Poland and other EU candidate states as well as the general population.

Information and knowledge is the first step towards minimising the effects of any impairment. It creates a situation where people with Spina Bifida and/or Hydrocephalus are full partners in all decision making. Children, their parents, adults, carers, professionals, need to have access to the latest information.

Professionals are not always well informed themselves and uninformed patients are the first victims of this. In 2002 some of our members stopped complaining about the lack of adequate knowledge of their professionals and instead, worked with selected professionals, organising education for their colleagues.

-This year AsbH, our German member, organised a successful Doctors weekend that was attended by more than 100 professionals.

-In Australia the parent organisation worked on a 49 page article on Spina Bifida and Hydrocephalus for general physicians in their own magazine the Australian Family Physician which is the Journal of the RoyalAustralianCollege of General Practitioners.

-The Spina Bifida parent association of Queensland organises professional counselling of women pregnant with a baby with Spina Bifida and Hydrocephalus to ensure that they get full and adequate information.

-The Spina Bifida Association of America created a successful foundation where parents, persons with Spina Bifida and Hydrocephalus are cooperating with professionals in research on Spina Bifida and Hydrocephalus.

-IF programmes in developing countries are translating the latest knowledge of the North towards realistic and full care in the South. Some of these projects are developing research programmes of future benefit to people with Spina Bifida and/or Hydrocephalus in the South as well as in the North. Local professionals from all levels are trained in the projects.

-In England ASBAH’s support and advice service for pregnant women and those planning a pregnancy recently cooperated with Maternity Alliance to ensure an even stronger voice in this aspect of their work.

-At IF conferences, more and more people with Spina Bifida, their parents and professionals seek real solutions, as equal partners ,to improve the quality of life of the target group.

This is a revolution!

Over the last 24 yearsIFhas played an important role in collating and circulating knowledge of Spina Bifida and Hydrocephalus world wide.

Everything IF consists of is contained within the concept of a user driven information bank: We call it the IF-Knowledge Centre.

The IF -knowledge centre is dynamic and constantly evolving. It is an ongoing process where all our members are full and active partners. A global network of knowledge and information from and for all those involved in the Spina Bifida and Hydrocephalus field.
Good mothers world-wide deserve and need that knowledge.

Pierre Mertens

President.

2. What is Spina Bifida? – What is Hydrocephalus?

What is Spina Bifida?
Spina bifida is one of the most common congenital birth defects, affecting 1 to 2 in every 1000 live births.

It is caused by a fault in the development of the central nervous system in the early stages of pregnancy, within the first 25 days after conception. The spinal cord and vertebrae do not form completely and the neural tube fails to develop normally. Because of these defects, people born with spina bifida usually have some degree of paralysis, which affects their mobility as well as their bowel and bladder control. More than 85% of babies with Spina Bifida also develop Hydrocephalus.

People with spina bifida often need long-term care and medical follow-up. However, with proper support, most people with spina bifida learn to overcome problems, gain confidence in themselves, and go on to live fulfilling, independent lives.

What is hydrocephalus?

Cerebrospinal fluid (CSF) is produced in the ventricles or cavities of the brain. It circulates throughout the brain and spinal cord and is absorbed into the bloodstream. Normally there is a balance between the production and the absorption of CSF. If the natural circulation of CSF is obstructed fluid accumulates in the brain and hydrocephalus results. The excess fluid presses on the brain causing damage to the tissue. In babies and infants where the bones of the head have not hardened, the head enlarges.

This obstruction of the normal CSF pathways can be caused by abnormal brain anatomy as is the case with Spina Bifida. It can also be the result of meningitis, tumours, cysts, trauma or intracranial bleeding which occurs more frequently following premature birth.

Hydrocephalus is treated surgically either by the insertion of a shunt, which is a valve and tube system, which diverts or shunts the excess CSF around the blockage so it can return to the bloodstream, or by an endoscopic third vertriculostomy (ETV) which creates a natural bypass for the CSF.

3. What is the International Federation for Spina Bifida and Hydrocephalus?

IF is a global network through cooperation and representation across borders.

IF is the worldwide umbrella organisation for these two disabilities and has a contact network in every continent. Its members are national organisations for Spina Bifida and Hydrocephalus in more than 40 countries. These national organisations support people with Spina Bifida and Hydrocephalus in their daily lives.

4. Structure of IF

IF is an international NGO registered under Belgian law since we based our headquarters in Brussels. IF Patron is HRH Princess Astrid of Belgium who is also president of the Belgian Red Cross.

The General Meeting is held every year and elections to the Executive Board are bi-annual.

External auditors control and approve the financial report.

IFhas two categories of membership, national membership and support membership:

The national members are national associations for Spina Bifida and Hydrocephalus, representing all local groups in their country in the General Meeting. National members receive notice of the General Meetings and are eligible to participate in and to vote at these. Nominations for new members are forwarded to the Executive Board and are then placed before the General Meeting for approval.

IFhas regular contact with national members via the Liaison Officer which each country is encouraged to appoint. All Liaison Officers receive regular news (Liaison Officer Newsletter) and are asked to disseminate this information within their country and association. Each year, Liaison Officers are invited to attend a Liaison Officer meeting which is held during the annual International Conference.

Support membership is open to anyone involved with Spina Bifida and Hydrocephalus. Local groups can also apply for support membership. Members receive notice of the General Meeting - and are eligible to participate in it - but do not have voting rights. The latter are accorded to national members. Support membership and subscriptions are very important to the organisation; they assist IF to expand its work through a network of individuals, families, professionals and volunteers.

5. The IF Board of 2002
Mr Pierre Mertens, President:
Marialei 27, 2900 Schoten, Belgium. Belgian nationality. Profession: visual artist.

Pierre Mertens (°1953) first child, Lies, was born with Spina Bifida and he started the Belgian Association for Spina Bifida and Hydrocephalus. He started PHOS The Belgian Platform Handicap and Developing Country work and stepped down from the PHOS presidency early in 2003. In 1995 he was elected President of IF. With his predecessor he initiated the IF projects in developing countries and he still advocates solidarity between the North and the South. In 2001 he published ‘Liesje’ a book about his daughter with Spina Bifida and this book was translated into French and Norwegian. As a European Ambassador for the Environment he draws attention to environmental influences on birth defects. Based on IF resolution ‘the right to be different’ he worked together with the Human Right committee of the European Disability forum (EDF) on a European resolution on prenatal diagnosis and termination of pregnancy for all disabilities. This resolution was unanimously accepted at the EDF General Meeting in Athens in 2003.

Mrs. Runa Schoyen,Vice President:

Pastor Fangevei 12, Oslo 0877, Norway. Norwegian nationality. Profession: music and drama teacher, teacher special education.

Runa Schøyen is the mother of two sons 19 and 20 years old. The youngest has Spina Bifida and Hydrocephalus. She was a teacher and worked with children, youngsters and adults with disabilities both in special and mainstream schools for many years. She has written books on cognitive problems related to Spina Bifida and Hydrocephalus.

Runa Schøyen was President of the Norwegian Association for Spina Bifida and Hydrocephalus for ten years. She made a remarkable speech on cognitive problems at the 2002 conference in Poland. Together with Eli Skattebu she is the driving force behind the IF projects in developing countries where she advocates for parent involvement and setting up parent groups.

Mr. Bo Hjelt, Treasurer:

Avenue Hamoir 37, 1180 Brussels, Swedish nationality. Profession Chairman of CDI.

In 1973, Mr Hjelt founded his own company and built it up to what it is today, an international company with about 25 offices in Europe, the USA and the Far East. Mr Hjelt had three children who had Spina Bifida. He set up a research foundation (CDI) to benefit Spina Bifida. The CDI Foundation has generated considerable funds over the years and the research carried out benefits the field of Spina Bifida.

His network of high level contacts in the commercial world is of great benefit to the IF work. In the board his main responsibility is to work towards a stable financial situation to ensure the long-term survival of IF.

Mrs. Kerrie Engel:

1 Vision Drive, Burwood East 3151, Australia. Australian nationality. Profession: Administrator & Researcher.

Kerrie Engel was born in 1966 with Spina Bifida and attended a special school before entering the mainstream education system. Kerrie completed her Bachelor of Arts at MonashUniversity in 1984. She has represented Australia in international swimming competitions and won a number of medals in her career; including bronze for the 400m freestyle event at the 1984 UK Paralympics, and gold, silver and bronzes at Far Eastern & Southern Pacific Competitions held in Hong Kong (1982) & Beijing (1994). Kerrie has worked at World Vision Australia for the past 11 years and has been active in ensuring that the organisation includes people with disabilities in its work.She is President of the Victorian Spina Bifida Association and Vice President of the National Association for Spina Bifida and Hydrocephalus. Currently she is building an international adults network within IF and she is preparing an international day for adults connected to the next IF conference. In the IF-Board she cooperates closely with the Australian President Trevor Capps who also brings in his professional knowledge into the IF board.

Mr. Teije Dijk:

Groustins 14, 9251 PE Bergum, The Netherlands. Dutch nationality. His youngest son, now 16 years old, was born with Spina Bifida.

Teije Dijk is Director of the Service for Education, Sports, culture, Welfare Social care and Public Health in a municipality. He is also part-time organization-advisor for public and private institutions.
For several years he was member and vice-president of the Board of BOSK, the Dutch organisation for people with motor handicaps. He is still involved with the working-group for Spina Bifida and Hydrocephalus of BOSK.

On the occasion of Bosk's 50th anniversary he organised a successful fundraising campaignfor IF projects in developing countries. He is also involved with the Dutch Council of Disabilities and Chronic Diseases. At national level he advocates for the rights of the unborn child with a disability. As a member of the IF Board, he has special interest in all ethics issues.

Mrs. Teresa Cole:
2 Buzzard Close, Hartford Huntingdon PE29 1XB, UK. English nationality.
Profession: Retired.

Teresa Cole is the mother of 3 grown-up daughters, two of whom have impairments. She was IF Vice-President from 1995 until 2000. Formerly Assistant Director for ASBAH, the national organisation for England, Wales & Northern Ireland with special responsibilities for the services offered by ASBAH through their family support team, Teresa Cole has a special interest in the empowerment of disabled adults and was also responsible for this part of ASBAH’s work for many years. She managed several very successful projects relating to adult empowerment which were part-funded by EU and involved adults from several European countries. She advocates for inclusion, and initiated the Survey on Adult Services which has formed the basis of the work now being undertaken to involve adults in IF. She has been a member of the Research Society for Spina Bifida and Hydrocephalus for many years. She draws attention to the importance of correct terminology at all times and tries to ensure that the language used in all written statements of IF is acceptable to the target group. She is the driving force behind a statement on food fortification initiated by ASBAH which is now being fully discussed at world wide level.

Mr. Klaus Seidenstücker:

Lahnstr. 66, 57250 Netphen, Germany, German nationality. Profession: Reverend
Klaus Seidenstücker‘s oldest son, now age 26, has Spina Bifida. For 25 years Klaus has been a member of the German Board and for 14 years the president of the German Spina Bifida and Hydrocephalus Association (ASbH). He serves a protestant congregation in Netphen/Germany and also is the managing director of ambulant health services there. He has been a member of IF board since 1996. He set up a foundation in Germany to ensure the financial stability of their Spina Bifida organisation. In IF he started the ethical discussion on prenatal diagnosis and termination of pregnancy resulting in the IF resolution ‘the right to be different’. One of his main concerns is the situation of persons and families with Spina Bifida and/or Hydrocephalus in eastern European countries.

Co-opted board members:

Aloysius Bakkide:
P.O. Box 2278Kampala, UGANDA. Profession: Engineer

Aloysius Bakkidde is the father of two sons and two girls. The second youngest, Martin Antony Kizito, was born with Spina Bifida and Hydrocephalus in September 1971, and is a wheelchair user. Mr Bakkidde moved to Kenya with the family in 1977 where he, together with
other parents, started an Association of parents and teachers and became its first Chairman. He was the Chairman of the P.T.A. for JoytownSchool for the Physically Disabled Children for five years before his return to Uganda in December 1987. In March 1993 he joined the Management Committee at Katalemwa Cheshire Home and became Chairman of the Committee in September 1993. In 1995 Mr Bakkidde together with others started the National Council of Cheshire Homes in Uganda where he worked as Chairman until he retired in 2000. In 1996 Mr Bakkidde was appointed a Trustee and member of the Management Committee of Uganda Society for Disabled Children (U.S.D.C.) incorporated in
United Kingdom. In April 2000 USDC was locally incorporated in Uganda and he became the Chairman of USDC-Uganda but remains a Trustee on the U.K. Board.
In September 2000 he retired as Chairman of the National Council of the Cheshire Homes. Mr Bakkidde was co-opted on the IF Board in 2002 and remains an active participant in nearly all activities involving people with disabilities.