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International Federation for Hydrocephalus and Spina Bifida _if_

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International Federation for Hydrocephalus and Spina Bifida _if_ Powered By Docstoc
					                                  International Federation for Hydrocephalus and Spina Bifida (if)
Consultative Status - special category - in the Economic and Social Council of the United Nations
                                                      Consultative Status in the Council of Europe




            Against all odds

              if Annual Report 2001
                Patron: Her Royal Highness The Princess Astrid of Belgium




                    if, Cellebroersstraat 16, 1000 Brussels, Belgium.
                  Phone: +32 (0)2 502 0413. Fax: +32 (0)2 502 1129.
                  E-mail: if@wanadoo.be. Web site: www.ifglobal.org
TABLE OF CONTENTS


 1.  Introduction
 2.  What is Spina Bifida – what is Hydrocephalus?
 3.  if's Mission
 4.  if's Goals
 5.  Structure of the Organisation
 6.  The if Board of 2001
 7.  The if patroness
 8.  Exchange of Knowledge and Information
         a. Our magazine BackUp towards an interactive web site
         b. Annual Conference
         c. “against all odds”
         d. You are my world, Poland 2002
         e. Let‟s talk Arequipa 2003
         f. Oslo 2004
 9. Ethics Project
 10. Influencing International Policy
 11. The Projects in Developing Countries
         a. Early Detection, Treatment and Rehabilitation
         b. Philosophy of the Project
         c. Partners and Projects
         d. Parent Groups
         e. CBR
         f. Funding
         g. African Liaison Newsletter
         h. Video on if Projects
         i. Widening the Network
         j. New Leaflets
         k. Training in the Projects
         l. Evaluation of the Projects
 12. Contacts with Members
         Membership
         Liaison Officers Meeting Toulouse
         General Meeting
 13. Special news from over the world
 14. The if Award
 15. Financial Report
 16. Thanks to the Donors
 17. Achievements and plans for the future




                                                                  2
1. INTRODUCTION


Against all odds
In most countries the organisation of healthcare for children with Spina Bifida and Hydrocephalus
starts at the Ministry of Health, operating through its many structures, including hospitals, security
systems and many other contributors. All of the elements within this long chain do of course have the
care of the patient as their main goal. However, such systems often result in patients‟ needs and
considerations being at the end of the chain.

The introduction of a song by Phill Collins is: „How can I just let you walk away, just let you leave
without trace‟. The title is „against all odds‟. It is also the hopeless thought of many professionals in
Developing Countries when they see the eyes of mothers who have travelled many miles with their
children with big heads. They have no possibility of helping them. They send them away and hope
they will never come back, that they will disappear without trace.

Against all odds is a song about a man who lost his girlfriend, and the likelihood of her returning to
him is against all odds, but „against all odds‟ he hopes of course she will return. He is desperate in
the way that only love can make a human being desperate.

Therefore the theme „Against all odds‟ is about love. The love of mothers walking days and days to
reach the hospital where they hope to get support for their children.

The fight of parents for correct treatment for their children, is a fight of love. When they leave the
hospital without trace, their story continues. They go back to their houses and have to explain to
their relatives why the money they used to travel to the capital did not help their child. The child‟s
head will grow bigger and bigger. So big that the little neck will not be able to support it. The child will
not be able to sit, or to walk. Probably he will become blind, may become deaf and mentally
impaired. He will suffer and the mother will need all her love to find the courage to feed and nurse
him - day after day.

Ten years ago they said that there were very few children with Spina bifida in Africa. Even the
literature mentioned that in Africa Spina bifida was very rare. After working in this part of the world
for more than 5 years we are convinced that there are regions where the prevalence of Spina bifida is
higher than in Europe. Parents just walked away without leaving a trace - not even in the literature.

At the 2001 conference in Dar es Salaam we presented the results of 5 years work in Africa. Against
all odds the if projects are beginning at the end of the chain and the battle has to be fought over
and over again at all levels, every day for each child, by each mother, each father, each nurse, each
rehabilitation worker, each surgeon.

But in the so called developed countries, too, people with Spina Bifida and Hydrocephalus have to
fight for their place in society. Inclusion in society can only truly be achieved if buildings are
accessible, schools are willing to individualise the programme, parents are helped financially to cover
the extra costs related to the disability, and companies are prepared to employ people with a
disability. Society must focus on the abilities and not on the disabilities. At the end of the chain
national associations for Spina Bifida and Hydrocephalus are still fighting to achieve these goals.
These organisations have often taken the initiative to launch primary prevention campaigns calling
for all women to take folic acid before conception.
 Thus the same child is born without a disability. However, the unborn child with Spina Bifida
deserves protection too. Prenatal diagnoses and over- pessimistic prognoses often lead to parents
feeling pushed towards termination of pregnancy as the best option. These children leave without a
trace. ALL pregnant mothers and prospective fathers have a right to receive full and correct
information about spina bifida and all the possibilities and limits of treatment.




                                                                                                          3
„Against all odds‟ many volunteers in if and in all national organisations are still prepared to give part
of their life to help improve the quality of life of children and adults with Spina Bifida and
Hydrocephalus.
They can‟t let them walk away, just let them leave without trace...




Pierre Mertens
President if




2. WHAT IS SPINA BIFIDA – WHAT IS
HYDROCEPHALUS?


What is Spina Bifida?
Spina bifida is one of the most common congenital defects, occurring within the first 25 days of
pregnancy. This deformity is known as a neural tube defect (NTD). Along with the obvious gap in the
skin covering the spine, the vertebrae and the nervous system is damaged. As a result of these
defects the child will have some degree of paralysis. Most children and adults will have problems with
bowel and bladder control. Research has shown that Spina bifida is a result of lack of absorption of
folic acid - the quality of food can have an influence on this, though other preventive measures may
also be necessary. More than 85% of children with spina bifida also have hydrocephalus or develop
this at a later stage.

What is Hydrocephalus?
Hydrocephalus is the result of too much cerebrospinal fluid (CSF), the fluid that circulates in the
cavities (ventricles) inside the brain, causing an increase of pressure within the skull. Normally there
is a balance between the production and the absorption of CSF. If the drainage pathways are
obstructed, which is the case when hydrocephalus develops, the fluid accumulates in the brain
ventricles resulting in compression of the surrounding tissue. In babies and infants the head can
enlarge but if the pressure is longstanding the brain is damaged.

The main causes are:
- Premature birth, which can be due to many things, including malnutrition
- Babies being born prematurely as they have higher risks of bleeding inside the brain
- Birth trauma due to poor or inadequate conditions at delivery
- Meningitis as a result of many different infections: TBC, syphilis, malaria
- Accidents/trauma: War, traffic accidents, and head injuries

Treatment of Hydrocephalus:
Hydrocephalus is usually treated by insertion of a drainage system ( i.e.. a shunt). A shunt is simply a
drain that diverts or “shunts” the accumulated CSF from the obstructed drainage pathways and
returns it to the bloodstream. Symptoms caused by raised pressure usually improve after successful
shunting but some problems will remain. Recently neuroendoscopy (telescopic surgery) makes
treatment of hydrocephalus possible without shunting in two thirds of patients (the success rate
depends on the cause of the hydrocephalus and varies between one quarter to nearly one hundred
percent).

Management of hydrocephalus by “Third Ventriculostomy” creates a natural bypass within the brain
allowing the fluid to drain. This is a procedure that does not have the complications of shunt
insertion. Infection is rare and the morbidity is very low. This low morbidity operation is a valid



                                                                                                        4
treatment for hydrocephalus in the difficult conditions of developing countries where follow-up is
inconsistent and retrieval of patients in case of complications is near to impossible.

Treatment of Spina Bifida:
Spina bifida is a condition that cannot be cured. In many cases several surgical interventions are
needed, such as the closure of the back after birth. Good medical care and intensive training can
prevent many complications. In recent years the development of treatment of spina bifida has
improved a great deal and increased life expectation of children with Spina Bifida. In particular,
developments in Continence Management and in the prevention of urological complications have
improved the quality of life.



3. if’’s MISSION

if’s mission is to improve the quality of life of people with hydrocephalus & spina bifida
throughout the world. To decrease the prevalence of hydrocephalus and/or spina bifida by
primary prevention.

     By quality of life if means equality of opportunities, choice, independence and human dignity.
     People with hydrocephalus and spina bifida in if‟s mission means the unborn babies, children,
     adults, but also includes parents, partners, relatives and friends.

     By working to decrease the prevalence, if intends to ensure that it takes into account ethical
     considerations and takes on board the human dignity of all people with hydrocephalus and spina
     bifida and their families. This can be done by prevention campaigns, improving general life
     conditions of the population, awareness building, dissemination of information on good
     nutritional guidance, etc.



4. if’’s GOALS
  if‟s goals are to:
   a. improve the quality of life of people with hydrocephalus and spina bifida
   b. encourage the establishment of new groups and national organisations of people with
       hydrocephalus and spina bifida. Organisations of people with hydrocephalus and spina bifida
       can contribute to the if mission by supporting each other and having an influential role in
       service delivery, training, etc.
   c. support these groups and organisations
   d. influence the quality of services delivery to people with hydrocephalus and spina bifida world-
       wide
   e. exchange knowledge, information and examples of good practice at international level, work
       with international bodies (UN, WHO, UNICEF, Council of Europe, EU, EDF, international NGOs)
   f. stimulate research
   g. lobby for primary prevention campaigns and influence international policies on these
       campaigns
   h. support people with hydrocephalus and spina bifida in developing countries through projects of
       early detection, treatment and rehabilitation
   i. encourage co-operation between organisations (within if and externally)
   j. encourage international discussion on ethics to ensure that people with hydrocephalus and
       spina bifida are included in all programmes (implementing UN Standard Rules)




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5. STRUCTURE OF if
if is an international NGO under Belgian law.
The General Meeting is held every year and elections to the Executive Board are bi-annual.
External auditors control and approve the financial report.

The if Board meets 4 times a year over 3 days at weekends. These meetings are located in different
countries and are connected where possible with local meetings and study visits. In addition to the
Board meetings, working meetings are organised whenever needed. Ms Els de Clercq, if‟s office
manager, attends all Board meetings as a co-opted Board member.

if is staffed by one full-time office manager, one part-time assistant, a part-time accountant and
several volunteers. In nearly all the African projects, if has one salaried employee. The person‟s
function depends on the local needs.


We thank the following volunteers:
Karen Turner (home page and PR)
Bengt Bengtsson from SCA Hygiene Products and his son Daniel (home page)
Frank Cole, Mol Raeymaeckers, Sister Jeanne Mertens, Simone Calliauw, Marianne and Catherine
Maitreau, Anita Van Mele (translation)
Lucien Biver (financial advice)
Kerstin Hjelt and Philippa Sarsfield-Keily (Friends of if)
Inneke Van den Biggelaar (secretarial assistance and translation)
Vero Van Den Abeele and Erik Hauters (web design and programming)
Zjuul Devens (camera and video work)
Björn Rundström (editor Back Up)
Drs Carla Verpoorten, Philippe Gillis, Michael Vloeberghs, Ben Warf (medical experts)
Mr Geert Vanneste (African project manager)
Eli Skattebu and Mona Berg (co-ordination and accounting Norwegian involvement in African project)
and all the volunteers working in the African projects.




                                                                                                 6
6. THE if BOARD

Mr Pierre Mertens, President:
Marialei 27, 2900 Schoten, Belgium. Belgian nationality. Profession: Expression therapist & visual
artist.
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 he 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 in Belgium he started PHOS (Platform Handicap and Developing Country
work), 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. In
2001 he was asked to become European Ambassador for the Environment.

Mrs. Runa Schoyen Vice President:
Pastor Fangevei 12, Oslo 0877, Norway. Norwegian nationality.
Profession: music and drama teacher, teacher special education.
Runa Schøyen lives in Norway and is the mother of two sons 18 and 19 years old. The youngest has
got Spina Bifida and Hydrocephalus.
She is educated within music, drama and special needs education and has worked as a teacher for
children, youngsters and adults with disabilities both in special and mainstream schools for many
years. She now works in the School Administration in Oslo.
She has written books on cognitive problems related to Spina Bifida and Hydrocehalus.
Runa Schøyen has been President of the Norwegian Association for Spina Bifida and Hydrocephalus
for ten years from 1987 till 1997. In 1995 she started to work within the executive committee of if
and was elected Vise president in 2000.
She is very involved in the work in developing countries and is the coordinator of the work done by if
and the Norwegian Association for Spina Bifida and Hydrocephalus in Africa.


Mr. Bo Hjelt, Treasurer:
Avenue Hamoir 37, 1180 Brussels, Swedish nationality.
Profession Chairman/manager.
Mr Hjelt studied in Sweden, the United States and Switzerland. He is an officer in the Swedish Army.
For 12 years, he worked in Germany in the non-ferrous industry. 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. He is the founder and Chairman of this company. Mr Hjelt had three
children who had spina bifida. He set up a research foundation to benefit spina bifida.
Mr Hjelt has helped the Board over the last 5 years with fundraising and was elected as a member of
the Board in Washington (1998).
Professor Tom Eskes (Department of Obstetrics and Gyncology at the University of Nijmegen) said the
following: “The CDI Foundation was created in 1985 to sponsor medical research carried out on the
cause and prevention of Spina Bifida. I was impressed by the fact that businessmen were willing to
sponsor medical research. The CDI Foundation has generated considerable funds over the years and
the research thus carried out benefits the 200-400,000 children born yearly worldwide with this
ailment. It is exceptional that the money donated by the CDI organisation has led to such a
successful medical research program that the disabling effects of Spina Bifida have been reduced by
72%".




                                                                                                          7
Mrs. Kerrie Engel:
1 Vision Drive, Burwood East 3151, Australia. Australian nationality.
Profession: Administrator & researcher.
Kerrie Engel is the eldest of two children. She 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 Monash University 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 is active in ensuring that the organisation includes people with disabilities in
its work. She has edited a text on WV experiences to date. Kerrie is President of the Victorian Spina
Bifida Association and Vice President of the National Assocation for Spina Bifida and Hydrocepahlus.
Kerrie is keen for adults to become more active in their own association and also for the members in
the Pacific Rim area to be more involved in IF.


Mr. Teije Dijk:
Groustins 14, 9251 PE Bergum, The Netherlands. Dutch nationality.
Profession: Director of the Service for Education, Sports, culture, Welfare, Social care and Public
Health in a municipality.
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 was member of the Board of BOSK, the Dutch organisation for people with motor
handicaps. He still participates in the working-group for HSB of the BOSK. He is also involved with the
Dutch Council of Disabilities. As a member of the if Board, he has special interest in ethicsissues .. He
likes walking, biking, music and nature.


Mrs. Teresa Cole:
Hartford PE187XB, UK. English nationality.
Profession: Retired.
Teresa Cole is the mother of 3 grown-up daughters, two of whom are disabled. She was Vice-
President of if from 1995 until 2000. She was a member of the International Federation for Spina
Bifida and Hydrocephalus-Europe Co-coordinating Committee until the if Board was delegated to carry
out European Liaison in 1997.       Formerly Assistant Director (Services) 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 has been a member of
the Research Society for Hydrocephalus and Spina Bifida for many years. She represented ASBAH on
the UK Disability Forum (Europe) and recently became a member of the UK UN organisation.

Mr. Klaus Seidenstücker:
Lahnstr. 66, 57250 Netphen, Germany, German nationality
Profession: Reverend
Klaus Seidenstücker is married and has three children. His oldest son, now age 25, has spina bifida
and hydrocephalus. For 24 years Klaus has been a board member and for 13 years the president of
the German Spina Bifida and Hydrocephalus Association (ASbH). He serves the a protestant
congregation in Netphen/Germany and also is the managing director of ambulant health services
there. Since 1996 he is member of the Board of if.
”In times of globalization social justice and ethical values seems to be endangered. This is of special
concern to disabled persons. Therefore as member of the if-Board I want to work against
discrimination, towards high ethical standards, adequate services and integration of people with Spina
Bifida and Hydrocephalus worldwide.”




                                                                                                          8
CO-OPTED BOARD MEMBERS

Mr Bob Talbott
On 12th February 1968, Bob and his wife Yvonne, were confronted with the arrival of a Spina Bifida,
Hydrocephalic baby son, Brendon.
Since that day their combined resolve to develop that child never faltered.
In recognition of the contribution of society to the welfare of Brendon, Bob immediately associated
with formation of the NSW Spina Bifida Group and later the Australian Spina Bifida Association.
By involvement at either international congress or attendee at local functions, communication and
dialogue have been a priority for Bob. Fortunately many propositions and directions of I f have been
robustly and sympathetically considered and directed with fervour by Bob Talbott.

Mrs Els De Clercq office manager :
Els De Clercq was born in 1974. She has always been very actively involved in youth organisations,
completing several courses in leadership. She has been leader of children in different age groups
from 1991 till 1998. She attended several painting classes, and continues both an active and passive
involvement in art. In „92 she began studying psychology at the University of Ghent and completed
these studies in ‟97 with a thesis on addiction. During her studies, she trained for several months in
different branches of psychiatry. On completion of her studies, she worked for one year in an
organisation, which specialised in raising funds for projects in developing countries, where she
became interested in disability and developmental work. Currently she is undertaking further evening
and weekend courses.

Björn Rundström President of Honour
Mälgasen 2213 SE-840 50 Sweden. Profession: Retired teacher.
Bjorn Rundström is married to Elisabeth and they have two daughters. The oldest was born with spina
bifida and is now 42 year old.
In 1978 he started the International Federation for spina bifida and hydrocephalus and he was
president till 1995. In 1993 he took the initiative to work also in developing countries. The general
meeting of if appointed him as President of Honour. From the beginning he was the driving force of
the if magazine Federation Focus and he is still writing articles as free lance journalist for if.




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7. THE if PATRONESS
“Everybody can generate unexpected potentials when there is a strong will and it’s for the
right reasons”

On Thursday, 13 December 2001, Her Royal Highness The Princess Astrid of Belgium, Patron of if, invited
Pierre Mertens, President of if, and Els De Clercq, if Office Manager, for a first meeting at the Royal Palace.

Her Royal Highness showed great interest in knowing            more about more about our Federation and
further co-operation was discussed.

Pierre Mertens told how the Federation had grown during the last decades and how it had developed into
an international NGO with its own projects in Developing Countries. He explained how most member
organisations had been started by parents wanting to improve the life of their children with Spina Bifida
and Hydrocephalus. Even the very large member organisations had begun at the kitchen table of a family
somewhere. The Princess had many questions and it was clear that she wished to understand all about
the two disabilities we represent. Princess Astrid expressed her appreciation for the energy and power of
parents of disabled children: “Each human being is different and everybody has unexpected potentials
when there is a strong will”. She said that she had attended the Paralympics in Sydney, Australia, and
that she had been very much impressed by the achievements of the athletes. Princess Astrid showed
special interest in the ethical programme of if “the right to be different” and underlined the role that
disability organisations such as if can play in widening the debate.
As President of the Belgian Red Cross, Princess Astrid is involved in international solidarity work and hence
appreciated very much our projects in Developing Countries.
Pierre Mertens and Els De Clercq gave to the Princess the if video “Beginning at the end of the chain”, the
if annual report and Pierre Mertens‟ book “Liesje”. The formal meeting became an informal chat about
love for children and life.

We are proud of our Patron and we are sure that the relationship with Her Royal Highness will grow and
be of benefit to many children with Spina Bifida and Hydrocephalus throughout the world



8. EXCHANGE OF KNOWLEDGE AND INFORMATION

a. Our magazine Backup towards an interactive website

For many years Björn Rundström developed Backup from a photocopied newsletter to a professional
magazine. It helped many people and it became a written forum about Spina Bifida and Hydrocephalus for
many groups association and individuals world wide.
„Federation Focus‟ and later „Backup‟ became a reliable friend of many of us in our fight for a better life
for people with Spina Bifida and Hydrocephalus. Not only a tool but also a contact place where we found
photo‟s and news of our international friends. Through Backup for many years all the members were
informed about what happened in the federation. A reliable friend for faithful readers.

Influenced by the new media such as Internet we have been considering other, more actual, possibilities
to communicate. In particular the high costs of international mailing made it impossible to ensure good
distribution of BackUp
The website was created, and as in other international associations E-mail and internet replaced printed
hardcopy.
Against all odds we got more that 10.000 visitor a year at our website. So many more people are
reached by internet than by a printed magazine and therefore „ B@ckUp on line‟ was introduced at the end
of last year. It was well received but when we were redesigning our website we also discussed the place
of B@ckUp on line. We received professional advice and support and we were advised to invest more in
this new tool. At present we have no knowledge of who our web visitors are. Therefore we need to make
the site more interactive. By renewing the site continually we want to create a faithful relationship with our
readers. We want them to come back to our site because they know that they will always find something
new. We are working at an e-mail list to inform our visitors about every new update.
In Summer 2002 we hope to have a new website with several newsgroups, introducing registration ,
payments and sponsoring on line, a news archive, a search engine and translation on line.
The concept of a magazine 4 times a year is not compatible with the new concept of a website that is
updated on a permanent base. As soon there is news it will be on line. Therefore in 2001 the old backup
was withdrawn and we and invested all our funds and manpower in the new interactive site. Giving up
Backup is like losing a valued old friend. This creates sadness and pain. We believe that we can achieve
more and reach more people by this new way of communication. We are convinced that Mr Björn
Rundström still has a vital role to play in this new Backup, by gathering information, writing reports and
articles. Formats may change but the contents will always be of people like him. WWW.ifglobal.org


B.    Annual conferences

The main annual if event is the yearly conference. People with spina bifida and hydrocephalus and their
families come together from all over the world to exchange knowledge and examples of good practice. The
conferences that have taken place since if began its activities are as follows:

        1979            Stockholm               The family situation
        1981            Dublin                  Independent living
        1983            Malaga                  Incontinence
        1985            Manchester              Making our way
        1987            Denver                  Climb every mountain
        1989            Antwerp                 Live your life
        1991            Stockholm               Together is strength
        1993            Deinze                  Wait a minute
        1995            Sydney                  Fast forward into the future
        1997            Bonn                    It‟s about me
        1998            Washington              Celebrate the past, envision the future
        1999            Perth                   A future with purpose - A future with choice
        2000            Toulouse                The right to be different
        2001            Dar es Salaam           Against all odds
        2002            Warsaw                  You are my world
        2003            Arequipa (Peru)         Let‟s talk - Hablamos
        2004            Oslo


C. Against all odds, Tanzania 2001

For the first time and following so many eventful years of challenging project development, the
international conference for spina bifida and hydrocephalus was organised in a developing country. Against
all odds, it was a resounding success and in so many ways.

Not only the actual conference - which was attended by some 112 people from 18 different countries - was
the long envisaged success; adults, parents, doctors and other professionals all gained from exchanging
their experiences.

The pre-conference days were of a very high standard.
Previous to the conference workshops were held at the disability hospital in Dar es Salaam.

At the Fieldworkers Day experts from several of our projects trained fieldworkers in all aspects of
Hydrocephalus and Spina Bifida.

The parents day was very well attended by many people from Tanzania and from abroad. More than 100
parents and children participated. They listened to some lectures and especially well received were the
testimonies of adults with Hydrocephalus and Spina Bifida from the North and the South. In the afternoon
the whole group socialised at the seaside.

Workshop for neurosurgeons




                                                                                                       11
An introductory Endoscopic Third Ventriculostomy (ETV) workshop was organised in the Disability Hospital
in Dar es Salaam with Dr Ben Warf taking responsibility for organising this in cooperation with Dr Kinasha.
The workshop was very well attended by professionals from several different levels. These results were
also shared with the audience during the main conference itself. Dr Warf began by presenting the
technique and the equipment. In a second phase, he reported on his personal experiences of 3 months
use of ETV in the Children‟s Hospital of Mbale. One truly remarkable result is that ETV can be used in post-
infectious hydrocephalus cases, which is very important for work done in developing countries as a major
part of the hydrocephalus cases are indeed post infectious. Dr Warf stated that ETV should be the first
option for treatment of hydrocephalus in developing countries. He presented also a comparative study of
the use of the Chabra shunt compared with the Codman shunt. The results were not significantly different
so he could conclude that the use of the Chabra shunt is an excellent alternative to the expensive
American shunts. Dr Warf shared these results also during the main conference. The lectures are available
from the if office upon request.

The against all odds conference
The actual conference was attended by 112 participants from 18 different countries. 10 out of 18 countries
were developing countries and the majority of participants were people working in projects in developing
countries. The conference was officially opened by the Honourable Minister for Health of Tanzania, Mrs
Anna M. Abdallah.

 The first day of the conference, the programme was focused on the people at the end of the chain: the
children, parents and adults with hydrocephalus and spina bifida. Many testimonies from people with these
conditions were shared with the audience and Tina Oneko, paediatrician in the CBR Kilimanjaro region,
reported on the value of support groups for parents and the first successes in this region.

The second day of the conference was more focused on medical issues on several levels. Dr Ben Warf
reported, as mentioned previously, on the first results of Endoscopic Third Ventriculostomy (ETV) in
hydrocephalus patients in developing countries - and his results were remarkable. Dr Buyse and Dr
Verpoorten gave a lecture on the applications of urological care and continence management in developing
countries.

Many discussion groups and spontaneous workshops took place during and after the conference, which
shows precisely the need for professionals in order to ensure continuous information flow and exchange of
experience. If will continue focusing on the importance of this process of continuous exchange of
experience and information between professionals and also on the training of professionals at all levels in
projects in developing countries.

This conference was also an opportunity for if to show and go into depth about the if projects in
developing countries with our members and partners. By showing what we are doing in the if projects, we
hope that our members will be spurred to further support our work in developing countries and we hope
that new initiatives for financial support for our work will thereby be generated and be very much
forthcoming.

We especially thank the whole CCBRT team for their professional cooperation in organising the main
conference and the CCBRT Disability Hospital for their willingness to have the pre-conference days
organised in the hospital buildings itself.

D. You are my world, Poland 2002

In 2002, if will hold its world conference in Poland with the theme YOU ARE MY WORLD. It will be the first
time the International Federation for Hydrocephalus and Spina Bifida (if) has organised its conference in
an eastern European country.

“Often it is not the impairment or the disability that causes a handicap but rather the attitudes of people,
an inaccessible society coupled with exclusion”.
The theme, “You are my World”, will focus on the influence that “the others” can have on the inclusion of
people with spina bifida and hydrocephalus in society. Solidarity with people with disabilities is essential in
overcoming the barriers of discrimination and social exclusion. “The others” are family, neighbours, local



                                                                                                            12
community members, the State, doctors, hospitals, all other care providers, the social system and the level
of security it provides, public opinion.

The political situation in Poland and other ex-communist countries changed dramatically from a socialist
system where the state organised social security, employment and healthcare, to a capitalist system.
This change was not always of benefit to people with disabilities. The Polish state will again have to invest
and modify it‟s system in line with the planned membership of the European Union. Again this will not be
of direct benefit to minorities at risk of being socially marginalized. Acknowledging the dramatic situation
of families with a disabled child in the EU candidate countries „You Are My World‟ focuses on social
influences and barriers to inclusion. The exchange of knowledge between people with disabilities in EU
countries and the candidate countries is essential and can create an adjustment in the economic focus of
the European Union. Solidarity with the people with disabilities will be necessary in Poland as well at
European level.

Therefore if abandoned the concept of a conference in an expensive hotel in Warsaw and is preparing a
dynamic project, going into Polish society visiting special venues connected to the theme of social
inclusion. “You are my world” will follow the whole life span of a person with spina bifida and
hydrocephalus. It will identify and highlight initiatives facilitating inclusion but will also address the
elements that cause and compound social exclusion. Linking venues to themes of inclusion: such as a
factory to employment, a school and schooling, a hospital and healthcare. The conference will create
awareness of these barriers and show examples of good practice.

“You are my world” will be a mobile project of solidarity going into society, making the world aware of
the needs of people with spina bifida and hydrocephalus in these candidate states.


E. Let’s talk – Hablamos, Arequipa 2003

For 2003, if plans to organize the annual international conference in Peru, in cooperation with Fundacion
PAZ-Holandesa as the local conference organizer. Let‟s Talk or Hablamos will focus on communication and
spina bifida & hydrocephalus:
 - Hablamos because of its historical link with the Inca‟s and their communication system
 - Hablamos to exchange the expertise among parents and the importance of parents associations
 - Hablamos, Parents with professionals and doctors with parents and children with spina bifida &
     hydrocephalus
 - Hablamos among the different specialists in the treatment of children with spina bifida &
     hydrocephalus and the importance of interdisciplinary teams
 - Hablamos about prevention
 - Hablamos on different ways by new communication systems that be used by and for treatment
 - Hablamos about inclusion of children and adults with spina bifida and hydrocephalus into the society

 In holding the world conference for spina bifida and hydrocephalus in Arequipa if will be organising its
conference for the first time in a Latin American country. Conference languages are Spanish and English
with simultaneous translation. The conference aims to create awareness of spina bifida and
hydrocephalus in Peru and the whole Latin American continent. It will especially attract the Spanish
speaking Spina Bifida and Hydrocephalus population.


F. Oslo 2004

For 2004 conference in Norway initial communications and preparations have already begun.




                                                                                                            13
9. ETHICS
The way the medical world gives negative, subjective and often incomplete information to parents of an
unborn child with spina bifida, determines largely the attitude and expectations towards this still to be
born child. Doctors state that the quality of the expected life will not be worth living. The medical world
often talks about spina bifida and hydrocephalus in terms of „useless existence' and 'lifelong unbearable
pain', and “treatment would even be unwanted and dangerous'. Therefore most doctors suggest
termination of the pregnancy to the future parents as standard treatment. If parents do not begin
themselves to look for more and correct information, most (90%) of them follow the doctor‟s suggestion.
Experience shows however, that if future parents are informed in a correct way and get a positive vision
on the future of their child, most of the parents are willing to do everything they can for their unborn child
and are willing to fight for a optimal quality of life for their child.
Therefore if believes that it is essential to focus on what parents can do during the last part of the
pregnancy; how they can help their unborn child, how they can optimise the quality of life of their unborn
child.
if believes that, besides questioning the recent medical evolutions, it is important to provide positive
alternatives to future parents and their environment, with focus on primary prevention and providing
correct and objective information.

In 1998, if began an internal discussion on society‟s attitudes to unborn children with a disability and
decided to bring this discussion to an international level. In 2000, an ethical study and workgroup on the
question of early pregnancy termination of children with spina bifida & hydrocephalus was initiated. This
ethical group is made up of experts from 7 different countries and aims to make this discussion more than
merely a medical issue. „The right to be different‟ conference in 2000 produced a resolution on the quality
of life of people with spina bifida & hydrocephalus. The Conference Resolution was distributed to all
members of if to be used in their country. Belgian, Dutch and French television all made documentaries on
this subject. In the Netherlands, this led to discussion at a political level. The Ministries of both the
Netherlands and Belgium were contacted in the hope of discussing the issue in a clear and concrete way at
the highest political level.

In 2001 the if president, Pierre Mertens, published a book about his own experience with his daughter
with Spina bifida. On the occasion of the launch of this publication if organized a well attended press
conference on ethics in Brussels.




10. INFLUENCING INTERNATIONAL POLICY AND DEBATE
if influences international policy and debate in a number of ways. As an organisation with Consultative
Status in the Economic and Social Council of the UN and Consultative Status in the Council of Europe we
report regularly on issues affecting people with spina bifida & hydrocephalus and their families.
Research having shown the importance of folic acid in the prevention of spina bifida, if and our members
around the world have lobbied for widespread knowledge and recognition of this - which has led to many
prevention campaigns being started.

In co-operation with a number of member organizations, Government Departments continue to help us
with funding for our projects in Africa, which in turn raises awareness of the many problems faced in less
wealthy parts of the world. In addition to this, the provision of funds which enabled African people to
attend our first international Conference in Tanzania "Against All Odds" was an indication of the
importance attached to our work in developing countries.

if has had discussions with its membership on the question of elimination late in pregnancy of babies with
Hydrocephalus & Spina Bifida (and other disabilities) and hopes that a Policy Statement will be approved
by the General Meeting delegates at the Conference in Poland . if wishes to widen this discussion to all
disabilities and contacted the European Disability Forum EDF, Mr. Bengt Lindqvist, UN Special Reporter on
the Standard Rules, and the International Disability President's Alliance (IDPA) on this subject. if was



                                                                                                           14
invited by Mr. Yannis Vardakastanis, President of EDF, which resulted in an invitation to present and
discuss this ethical discussion at the AGA of EDF in Madrid 2002.

if-Europe: if members play a major part in Awareness Campaigns and give presentations on
discrimination issues, speaking of their own experiences and explaining to others how new laws are
beginning to make a difference in Europe.

if examines examples of good practice in such areas as employment, and publicises these as widely as
possible. As the European Community grows and gains in influence, it is essential that if members are
actively involved and their views known on the many changes taking place which will have an effect on
their lives. With this on mind our members do take an active interest in disability issues throughout Europe
and work continues on two major projects - PREVENTION and ADULT SERVICES. Information gathered as
part of the Prevention project was formulated into a discussion document on Health Claims, Food
Fortification & Neural Tube Defects Policy in Europe. if collaborates with “Folsäure Offensive” in
Switserland, which is a private initiative to promote Folic Acid in food to prevent neural tube defects. More
information cab be found at www.folsaeure.ch

The interest in the Adult Services work has resulted in a specific section of our magazine aimed at Disabled
Adults. It is hoped that the final reports will contain sufficient detailed facts to influence governments and
policy-makers throughout Europe and other parts of the world.


11. THE if PROJECTS IN DEVELOPING COUNTRIES
While national organisations specifically focus on service delivery in their own countries, if looks across
borders. 6 years ago, if started a projectfor early intervention, treatment, rehabilitation and follow-up of
Spina Bifida and Hydrocephalus patients in Developing Countries.

The aim of this project is to prevent as far as possible, Spina Bifida and Hydrocephalus, and
improve the lives of Spina Bifida and Hydrocephalus patients and their families, by
organising appropriate training, surgery and rehabilitation, through existing medical,
therapeutic and community based services in the different partner countries, and possibly
elsewhere.

if works together with several well developed partner programmes in Africa, both community based and
hospitals, which are trying to meet with the medical and (re)-habilitative needs of persons with
hydrocephalus and/or spina bifida. Some years of experience however, made us realise that there are
several missing elements in the ways that they provide their services. Disabled Persons and their families
are not involved in all aspects of rehabilitation, there is a lack of training at several levels, there is a lack of
awareness in the community, and there is a lack of proper equipment and consumables for appropriate
treatment. This project wants to address these gaps in provision of services within these existing (and
within some new) project partners. In connection with the if – programme parent and users groups are
formed and they are encouraged to grow to an organisation of people with disabilities.
The vision of this project is to complement the existing efforts, by building on what has already been
achieved by parents and existing service delivery systems. Professional Services for people with
Hydrocephalus and Spina Bifida, with community-based follow-up were non-existent before we started our
pilot projects in developing countries. This is exactly why the if has decided to develop co-operation with
the parents and potential service delivery systems in these countries.

In 2001, the project, which was already running in 6 locations in East Africa, also began running in the
seventh project in Mbale (Uganda). New contacts were made with different projects from countries in
Africa and other developing countries. For the new contacts, we concentrate on providing correct
information and exchange of our expertise in the field.

In 2001, we have placed great emphasis on the training of both local professionals on all levels and the
parents of children with Spina Bifida and Hydrocephalus (user group). By continuous training of local
professionals the project will not only be able to reach more children, but also guarantee provision of
better quality of the care.




                                                                                                                 15
An alternative treatment for Hydrocephalus, Endoscopic Third ventriculostomy (ETV), was initiated in
Mbale and the results of the first 7 months are of extreme importance for the further treatment of
Hydrocephalus in developing countries.

The first research on the incidence of Spina Bifida was started in Malawi and the experience in the use of
ETV will be indispensable for further research on Hydrocephalus in developing countries.

The project placed great emphasis on encouraging parents to come together and the first initiatives for
parents groups were begun.



a. Early Detection, Treatment and Rehabilitation in Developing Countries

Early detection incidence and prevalence.
Early detection is complex. In regions where if organised campaigns ( radio publicity and leaflets for
health workers) the number of patients made it impossible to organise effective services. Experience
showed that even without publicity the patient numbers were already high. With improved services there
was an immediate increase in clinic attendance and this trend continues. A local survey in East Africa
showed that the incidence of spina bifida is probably higher than described in international literature. The
incidence of hydrocephalus is high due to large numbers of acquired forms as well as congenital forms.
In Malawi, Uganda and Tanzania, the first steps have been taken towards registering the incidence of new
born babies with spina bifida.
In March 2001, a research report from the Muhimbili Hospital in Dar es Salaam on the registration of
17 000 new born children showed an overall incidence of 1.82 NTD‟s per 1000 live births.
In co- operation with the University of Bergen (Norway), the KCMC hospital in Moshi recently started a
similar registration survey. Further research on the incidence and prevalence of spina bifida and
hydrocephalus is needed. To enable the analysis of the causes of hydrocephalus, the registration of the
medical history of patients with hydrocephalus has been started in Mbale (Uganda).                  Acquired
hydrocephalus (without spina bifida) in East Africa is often caused by inadequate treatment of meningitis.
Vaccination has been proven effective in reducing the incidence of meningitis.
Further research of the incidence of hydrocephalus caused by meningitis is needed to influence the
introduction of vaccination campaigns by policy makers
A training programme is needed which addresses early detection and the correct treatment of meningitis,
and should be aimed at primary health care workers.
Meningitis is often incorrectly diagnosed and treated as malaria.

Treatment of spina bifida and hydrocephalus.
Whereas a lack of shunts was seen as the main reason for non-treatment initially, the problem was
actually more complex. This became apparent after shunts were provided in the projects. The first external
evaluation showed an unacceptably high infection and blockage rate after shunting.
As the result of this evaluation, the programme invested in the development of
    - information and training for parents and field workers
    - staff training at all levels
    - selection criteria for shunting
    - theatre facilities and equipment
    - pre- and post operative care, involving paediatricians and the use of preventive antibiotics

in 2001 the first steps have been taken to include Endoscopic Third Ventriculostomy (ETV) in the
programme. Dar es Salaam and Mbale have been selected as the two centres, where this technique will
be included initially.
    - in Mbale, the first ETV interventions were successfully performed in June 2001
    - at the new Disability Hospital in Dar es Salaam, a training session for ETV was held for the
        surgeons of the various projects prior the conference.

The closure of the back in patients with spina bifida was discussed with all surgeons. Often by the time
the patients reach the project the wound is already infected. Local disinfections and treatment with
antibiotics is introduced before surgery. Training to improve the closure and postoperative dressing has
been organised. Up to the present time the programme has mainly focused on surgery. Surgery is only
the first step in lifelong rehabilitation.



                                                                                                         16
0rganisation of care for children with hydrocephalus and spina bifida is complex.
To ensure that all problems of parents and children are addressed, a co-ordinating staff member was
assigned to each family.      As part of the if programme a specially trained local staff member was
employed, to ensure that total care is offered in all areas of the children‟s lives.
The initial education varies according to the local situation. It can be a spina bifida nurse on a ward, a
travelling social worker, a physiotherapist in the CBR project or a paediatrician in a hospital. This flexibility
and diversification from one project to another is essential for an effective cost/benefit approach.

Rehabilitation
Most projects are working with CBR programmes that ensure early detection and follow up at home. This
network is functioning well but some patients come from regions not covered by a CBR project. Strategies
to solve this problem have to be developed. In Uganda the project engaged a social worker to visit
patients who are not covered by a CBR project at home.
Mobility, incontinence and protection of kidney function are major problems for people with spina bifida.
Recently several projects began including urological care (clean intermittent catheterisation) and
physiotherapy.
Workshops for technical aids are available in Kampala, Lusaka, Moshi, Dar Es Salaam and Kijabe. These
must be set up in other projects too. Exchange of expertise between the         various projects is being
developed.

Successful parent meetings were organised in Moshi, Kampala and Dar es Salaam. Informed parents
contribute to a decline in the complication rate and are active partners in the rehabilitation process. The
input of the Norwegian parent organisation for spina bifida and hydrocephalus has been crucial in this
matter.

Conclusions
The experience of the first years proved that the          if programme for early detection, treatment and
rehabilitation of children with spina bifida and hydrocephalus in developing countries responds to an
existing need.
All projects improved the quality of their services to the target group.
Surgery organised by the if programme improved the life-expectancy and quality of life for many children.
Some children survive early infancy without surgery, but all children need rehabilitation to develop their
full potential. Training, parent involvement, and the establishment of parent organisations are the best
guarantee of effective rehabilitation and integration.
Initial steps in research on the incidence - stimulated and initiated by the if programme - are essential
for collecting scientific figures. This information is needed to increase awareness of these conditions and
for lobbying for the creation of national prevention campaigns.
Expertise in all elements of the treatment and rehabilitation of spina bifida and hydrocephalus is a result of
a continuous process of training and quality control. The exchange of expertise will increase the quality of
the services. The if policy of improving the potential of existing projects has been shown to be effective.
Ongoing evaluation and quality control involving the target group ensures appropriate adaptation of
working methods and strategies. This is essential for the success of the programme.
Pursuing this flexible approach with diversification between the projects will be the guarantee of further
success in the future.

Hope for the future
Working in Africa with children with hydrocephalus has been an ongoing fight against infections, shunt
blockage, and reaching the children in time. Several times it was not clear whether the fight was
realistic. In January 2001 year a meeting was held in Mbale to discuss to discuss these concerns with Dr
Ben Warf. Dr Warf is an American paediatric neurosurgeon working in the Cure Hospital in Mbale in
Uganda
The following points were put to him:
     - There was a need to prove that the Chabra shunt is as good as the very expensive shunt from the
          western countries because some surgeons said that blockage and infections were caused by this
          cheap shunt.
     - Because of all shunt problems in the programme ETV was introduced as an alternative treatment
          in Africa. Two very expensive machines were bought and were lying unused for two years in the




                                                                                                              17
        storeroom at the disability hospital in Dar es Salaam. Would ETV work and for which type of
        Hydrocephalus
    -    There was concern that most hydrocephalus cases were caused by meningitis. and that the
        cerebral fluid would be cloudy possibly being an additional reason for shunt malfunctions and
        infections; this may also be a reason why ETV would not work.

 Nine months later, Dr Ben Warf had very positive answers to most of these points. He presented these
answers at the conference „Against all odds‟ in Dar es Salaam. Here you will find a summary of the lecture
on Post infectious Hydrocephalus and the full lecture on his experience with ETV. In this annual report we
present only the conclusions. The full texts can be found on Internet www.ifglobal.org

Conclusions ETV:
1) ETV can be performed safely in this setting.
2) Overall success rate was around 75%.
3) Results were slightly less successful in young infants, but age is not a contra indication.
4) ETV works well for post infectious hydrocephalus (79% success rate).
5) The group with the single highest failure rate was that of patients with non-post infectious
hydrocephalus and large fourth ventricle.
6) ETV should be the first-line therapy for hydrocephalus in developing countries.

Conclusions Post infectious Hydrocephalus:
1) Neonatal meningitis appears to be the single most common cause of hydrocephalus in Uganda.
2) This is a public heath/preventive medicine issue, which needs to be addressed.
3) ETV is a very effective treatment for post infectious hydrocephalus.
4) When a shunt must be used, inexpensive Chabra shunts perform well, and may be more cost effective.


b. Partners and projects

if at present cooperates with 8 different partners in Africa and hopes to expand to other regions and parts
of the world.

Dar Es Salaam (Tanzania):               CCBRT Disability Hospital
Moshi (Tanzania):                       CCBRT CBR Kilimanjaro
Kijabe (Kenya):                         AIC Bethany Children‟s Hospital
Kampala (Uganda):                       Cheshire Homes Kampala
Mbale (Uganda)                          Children‟s Hospital Uganda
Lusaka (Zambia)                         CBR Cheshire Homes
Blantyre (Malawi)                       MAP Orthopaedic Hospital
Arequipa (Peru)                         Fundacion Paz Holandeza

Other programmes in Developing Countries will need strengthening, for example, in areas of information,
shunts and training. First contacts have been made with Mombassa (Kenya), Addis Abeba (Ethiopia),
Harare in Zimbabwe. In co-operation with other international NGO‟s we support hydrocephalus projects in
the Philippines, India, Brazil, Argentina, Ivory Coast and Cameroon.

The various projects provided adequate medical care for children with Spina Bifida
and/or Hydrocephalus. In 2000, a total of 301 operations were performed. The following operation results
were achieved in the different projects in 2001:

    -   Dar Es Salaam: 97 operations on Spina Bifida or Hydrocephalus
    -   Moshi: 42 children with Hydrocephalus attended the clinics, of which 17 received a shunt. 9 shunt
        revisions were performed. 50 children with Spina Bifida attended the clinics, of which 22 were
        operated upon. In general, the possibilities for surgery in Moshi have improved due to the
        presence of 2 paediatric surgeons. Clean intermittent catheterisation (CIC) started in 8 patients.
    -   Mbale: 232 operations on hydrocephalus and 64 myelomeningoceles. 163 endoscopies, of which
        146 for Hydrocephalus.
    -   Kijabe: total of 95 operations: 51 operations Hydrocephalus, 19 Spina Bifida and 25 operations on
        children with both conditions



                                                                                                        18
     -   Blantyre: 35 shunt operations
     -   Lusaka: 2 celes closed, 125 shunts were inserted. The rate of shunt complications is very high,
         though already lower since the use of the chabra shunt. In 2001

An alternative treatment for Hydrocephalus, Endoscopic Third ventriculostomy (ETV), was started in
Mbale. The second Endoscopic Third ventriculostomy (ETV) machine has been installed ready for use in
Dar es Salaam and will be operational early 2002. The results of the first seven months of ETV are
impressive: 163 endoscopies, of which 146 for Hydrocephalus.

C.        Parent groups

The project encourages parents of children with Spina Bifida & Hydrocephalus to come together to discuss
their experience. Regular meetings among parents were organised in Dar es Salaam and Moshi. In Kijabe
and Mbale, the first initiatives for such meetings have begun. In Moshi preparations are underway to
establish an official parent-group. In Kampala, a workshop for mothers was organised, with training in
nutrition, prevention, hygiene and general information on Spina Bifida & Hydrocephalus. In Peru, the first
parent group was inaugurated (APHEBI) in Arequipa and the parents of APHEBI now have regular
meetings with the support of Paz-Holandesa.

The input of the Norwegian parent organisation for spina bifida and hydrocephalus has been crucial in this
matter.


Training in the projects

The project in Moshi organised a three day seminar on neuro-peadiatrics in March 2001.
In Kijabe, 2 nurses and in Mbale one nurse were trained to take care of the Spina Bifida children in the
hospital (Spina Bifida nurses).
In Kampala, a social worker was trained to take care of the home based follow up of the Spina Bifida &
hydrocephalus children.
In Blantyre, a clinical officer has been selected for training in shunt insertion and this experience resulted
in his performing 25 shunt insertions himself. The success of this training has encouraged the project to
continue the training of clinical officers.
In September 2001, if organised its 13th International Conference for Spina Bifida and Hydrocephalus in Dar
es Salaam, with successful training sessions for the different professionals representing each project. The
conference was attended by 112 people from 18 different countries and was the long envisaged success;
adults, parents, doctors and other professionals all gained from exchanging their experiences. 10 out of 18
countries were developing countries and the majority of participants were people working in projects in
developing countries.
An Endoscopic Third ventriculostomy (ETV) workshop was organised for the neuro-surgeons and neuro-
paediatricians of the different projects.
For the local fieldworkers in the different projects, a special education day was organised where the
parents of children with Spina Bifida & Hydrocephalus could also benefit from the exchange of information
and knowledge passed on during the special days for parents. More information on this conference and the
different workshops can be requested at the if office

Funding

NORAD through the Atlas Alliance and the Norwegian blind Organisation in co-operation with
Ryggmargsbrokkforeningen, the Norwegian Association for Spina Bifida and Hydrocephalus, are funding
the major part of our work in Developing Countries. RBU in Sweden is currently approaching the
SHIA/SIDA for new funding for the if projects.

f. Video and other educational material

if produced an informative video with the title „Beginning at the end of the chain‟ on the projects for
children with spina bifida & hydrocephalus in developing countries. The scenario was written by Pierre




                                                                                                           19
Mertens and Mr Zjuul Devens directed the production. This video was shown for the first time in May
2001 at the Board meeting in Finland and was well received at our international conference in Tanzania.

if produced leaflets on Hydrocephalus and Spina Bifida and these are available in several languages.




12. CONTACTS WITH MEMBERS

a.      Membership

if has two categories of membership, national membership and support membership.

The national members are national associations for spina bifida & 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.
if has 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.

Support membership is open to anyone involved with hydrocephalus and spina bifida. 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.


b.   Liaison Officers meeting in Dar es Salaam

if keeps the Liaison Officers from each member country up-to-date by issuing a regular Liaison Officers
newsletter, providing the latest and important news from if. Once a year, during the international
conference, a Liaison Officers meeting is organised.

Each year, Liaison Officers are invited to attend a Liaison Officer meeting which is held during the annual
International Conference. The meeting in 2001 was held on the evening prior to the start of the
conference and was attended by 12 Liaison Officers. A report of the meeting was distributed to all other
countries for information.


13. if AWARD
Each year, the International Federation for Hydrocephalus and Spina Bifida ( if) presents the if Award to an
individual or organisation in recognition of the special contribution they have made to the service of
people with disabilities in general or to people with hydrocephalus and spina bifida in particular. The award
itself is in the form of a bronze statue. It was designed and created for if by the Swedish artist Mr Olovson.

The if Award for the year 2001 went to Dr. Carla Verpoorten from Belgium by unanimous decision of the
international Board.

Dr. Verpoorten is neuro-paediatrician and coordinator of the Spina bifida team of the university hospital of
Leuven (Belgium) where she has been working for 30 years.

Dr Verpoorten is well known in our Federation giving excellent lectures at several of our conferences. She
did an remarkable literature study on termination of pregnancy when the unborn child has Spina Bifida and
or Hydrocephalus. This was the basis for the discussion at Toulouse Conference and led to the if
resolution „the right to be different‟.




                                                                                                           20
Dr Verpoorten understands why „Against all odds‟ became the theme of the 2001 conference. It is very
difficult to organise good and effective care in Developing Countries. She has been involved in the if
African project from the outset, giving training in Kenya to Lilianefonds mediators and at all levels in
each of the projects. She takes small steps permanently evaluating what is being done, attending
meetings and discussions. Dr Verpoorten is diplomatic, often keeping her thoughts to herself, but never
when the quality of care is involved.

She is first of all a wonderful human being.

 She is also a good doctor. Listening carefully to parents and the children because she knows that their
information is crucial to find the right key to help them. She begins with this information and uses her
great expertise and experience as a doctor to find some answers .. She has studied for her entire life.
Knowing that she often does not know. Being critical of herself and the others.
 Here is just one example:

In one project a young lady of 18 with spina bifida had problems with pressure sores. The mobile team
took her to the hospital en route from one of their out reach clinics. The
 young lady had already had one foot amputated and the leg had big infected pressure sores, which made
surgery on that leg impossible. She was to be sent home without any other care.

 Dr Verpoorten insisted on speaking to the girl and after a while we found translator. After talking to the
girl, Dr Verpoorten thought that 18 years of experience having spina bifida in the field would be of great
value to if. and thought that possibly she could be helped by a wheelchair. However this young lady was
from very far away and after using public transport she had to crawl on her infected knees for miles to
reach her home. Where she lived it was impossible to use a wheelchair. What she really needed were
crutches. These would prevent further damage to her foot and knees. and the pressure sore could be
looked at further. Simple crutches will improve her life dramatically. If Dr Verpoorten had not talked to
and listened to the young lady treatment would have been nothing more than sending her crawling for
hours on the pressure sore with the message „come back when there is no infection.
The combination of being an excellent doctor and being a wonderful human being is very rare and the if-
award 2001 is well deserved..




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14. FINANCIAL REPORT
Balance sheet as at December 31, 2001

.in Euro                                 Active               Passive                      .

Patrimony                                                     82994,30
Profit-losses reported                                        61377,77
Losses in 2001                          28591,59

Members account                          4500,50
Advances to projects                     7138,52               3574,60
Suppliers account                                             35093,44
Transit accounts                          585,58

KBC Working account                     94533,35
KBC Saving account                      21256,49
KBC Norad account                       26290,06
KBC Conference account                      0,00
Cash                                      144,02

Totals                                  183040,11             183040,11



Statement of income and expenditures for the year ended December 31, 2001
                                               Expenditures          Income
Operational expenditures in Euro                                                  .


Staff related costs                            54674,17
Projects costs                                 50705,60
Medical material and publications              83410,59
Event organisation                             17155,92
General office functioning                     14338,24
Transport                                      20237,59
Accommodation and incidentals                  20947,13
Presidents expenses                                5745,76
Bank charges                                        875,38
Total expenditures                            268090,38
Incomes in Euro                                                                           .
Financial incomes                                                        460,38
Conference fees                                                      4375,28
Memberships                                                          2360,99
Norad subventions                                                 132636,46
Donations and contributions                                         99665,68
Total incomes                                                     239498,79
Deficits/Surplus                                                                      .
                                               28591,59


                                                                                          22
Report of the auditor
In accordance with regulatory requirements, I am pleased to report on the performance of the audit
mandate which if has entrusted me. I have audited the financial statements for the year ended 31
December 2001 and show a balance sheet total of 183.040,11 € .
In my opinion, proper books of accounts have been kept and the balance sheet and the statement of
income and expenditures are in agreement with the books of accounts.
Operations have been conducted in accordance with the requirements of the Belgian auditing standards as
issued by the “Institut des Reviseurs d‟Entreprise/Instituut der Bedrijfsrevisoren”.
As a results of my examinations, I recommend that the accounts hereby submitted to you be approved.




June 2002
Lucien Biver



15. THANKS TO THE DONORS

Of course, none of this important work would be possible without the generous support of so many people
and organisations, and we therefore record our great appreciation of the interest and financial backing
given to if from so many sources.

For the day-to-day business of the Board and its meetings we have been indebted to national
organisations who have paid the costs of a member of the Board.
NORAD through the Atlas Alliance and the Norwegian blind Organisation in co-operation with
Ryggmargsbrokkforeningen, the Norwegian Association for Spina Bifida and Hydrocephalus, are
funding the major part of our work in Developing Countries.
Oever, a cooperative of congregations in Belgium supported the Ethical work in Belgium and Europe. Also
individual Belgian congregations, such as de Zusters Annonciaden Huldenberg en Zusters van liefde
Zonhoven, supported this ethical work.

SCA Hygiene Products and especially Bengt and Daniel Bengtsson assist in keeping the website and
B@ckUp online up-to-date.

The generous contribution of Nestlé SA assisted us in the development of our project for children with
spina bifida & hydrocephalus world-wide.

The KBC bank sponsored our press conference on ethics in Brussels

A generous donation was made by all employees of Permobil AB Sweden, which was handed over on
the occasion of a press conference in Brussels.

Karl Storz Endoscopy ltd., CBM and the Norwegian Foreign Department (Det Kongelige
Utenriksdepartement) sponsored the conference in Dar Es Salaam.

0ther donations such as those of our Support Members are too numerous to mention but have helped us
to respond quickly to requests for help and information from all continents of the world. (It will be realised
that cost of postage can be enormous in an organisation such as ours).

All donors, large or small, are given regular reports on our work and projects, which would not be possible
without them.




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They are all valued supporters of this vital work and we look forward to a future in which we can count on
their continued interest and financial backing.




16. ACHIEVEMENTS AND PLANS FOR THE FUTURE

In the 23 year history of if we have passed many milestones, but the year under review has been
especially important for several reasons.

This year our work received recognition at the highest level as we were honoured by H R H Princess Astrid
of Belgium, who graciously agreed to become our Patron; this was made especially memorable by a
meeting between The Princess, The President of if, and our office manager, at the palace to discuss our
work.

In this year for the first time in our history if held a most successful Annual Conference and General
Assembly in a Developing Country. The good relationships with our partners in Tanzania ensured that the
representatives from many different countries in Africa and other parts of the world learned many things
from each other and from the professionals who were there both to listen to parents and share their
knowledge.

The conference also enabled training on Endoscopic Third Ventriculostomy (ETV) to be given to a group of
neurosurgeons, thus preparing the way for this procedure to be offered to many more countries.

The success of our projects in Africa has led to new contacts throughout the world and requests for similar
projects elsewhere. Whilst we look for more sponsorship we have been able to help many more children
by providing information, expertise and very importantly, by providing shunts where appropriate and
necessary.     Further major projects will be set up only when further finance becomes available.
Meantime, study visits were set up for professionals such as neurosurgeons and researchers, in
continuance of the exchange of information which we have encouraged for many years.

The current year has also seen an increase in enquiries from individuals for whom we provide contacts and
information and to whom we offer support in setting up new parent organisations – examples being the
first spina bifida association in Peru and in Wallonian Belgium.

During the year under review and in this fast-growing worldwide network if has taken a leading role in the
major discussions on ethics which are taking place currently in many countries, being involved in television
and radio interviews, Press Conferences, and playing an active part in high-profile Belgian and
Netherlands campaigns on the issues surrounding termination of pregnancy and euthanasia.

Because if places great importance on the Ethics discussions, the agenda for our 2002 conference in
Poland (another “first” for Eastern Europe) will include a Policy Statement for approval by the General
Meeting. If wishes to widen its own discussion to other disabilities.

The world is changing very quickly but we face the future with confidence – our plans include holding our
first ever conference in Latin America, widening of our international network, continuing active
involvement in the ethical debate, and the setting up of a new, dynamic interactive website with a digital
newsletter, as we believe this will enable if to reach more people.

Within our existing membership there are plans to set up a French division within if , continuation of our
solidarity with children in developing countries, and further work towards mainstreaming with all that this
involves if we are to change attitudes and ensure an accessible society wherever people are living.

Everything which has been achieved in this and previous years has been possible because of the
commitment of our Sponsors, who gave, and continue to give generous finance for our work; because of
the band of volunteers giving generously of their time and expertise; because our Board works tirelessly




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in the interests of the thousands of families and individuals who rely on our support; and because we are
fortunate enough to have an office manager whose dedication to her formidable workload never falters.




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