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International Federation for Spina Bifida and Hydrocephalus
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The 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 is designed and created for IF by the Belgian artist Pierre Mertens to replace the previous statue created by the Swedish artist Mr Olovson. The current IF Award is a statue representing an Etruscan woman with a hole in her back and abdomen. It is representing both ‘the pregnancy in danger by prenatal diagnoses’ as well as the ‘disability’ represented by IF. The view through the body represents hope. It is a focused way of perceiving the world through the hole in the back of people.

An overview of the past IF awards

2008    Dr Rob de Jong
2007    Flour Fortification Initiative
2006    Bo Hjelt
2005    Dr Ben Warf
2004    Ryggmargsbrokk- og Hydrocephalusforeningen
2003    Geert Vanneste, CEO of CCBRT
2002    Björn Rundström
2001    Dr Carla Verpoorten
2000    Hans Hoegh
1998    Guro Fjellanger
1997    Jim Begg from BLD
1997    Mami Kawasaki

2008 award for Dr Rob de Jong
Dr Rob de Jong

The IF award 2008 is given to Dr Rob de Jong, paediatric neurosurgeon, on account of his scientific contributions concerning the debate on active euthanasia and his critical comments and publications on this issue. He has published a scientific paper covering pain and unbearable suffering by babies with Spina Bifida. His thesis: children with Spina Bifida are not suffering unbearably and pain can be managed.

He has researched the issue of pain in newborns with Spina Bifida, concluding that when the baby suffers from pain, it can be alleviated easily. Besides, ‘unbearable and hopeless suffering’ are very subjective experiences. Presenting the consequences of Spina Bifida in such a negative way, creates an incorrect and narrow-minded image of this neural tube defect. As a result, many parents themselves request for life-termination! The criteria used in the Groningen protocol are incorrect, it is incompatible with human rights and it is unclear in whose interest these decisions are.

2007 award for Flour Fortification Initiative
Ugandan First Lady, Mrs Museveni, offers IF award to Prof Dr Maberly

The Flour Fortificaiton Initiative (FFI) is a world-wide network of representatives from public, private and civic organizations who collaborate to make micronutrient fortification of flour standard practice. Their aim is to have 70% of the flour fortified by 2008. More information can be found on their website, click here.
The network is administered from Emory University in Atlanta, USA by Prof. Dr. Glen Maberly, who also delivered the keynote speech of the IF conference in Uganda. It was the Ugandan First Lady herself, Mrs Museveni, who handed over the IF Award to Dr Maberly.

2006 award for Bo Hjelt
Mr Bo Hjelt
During the opening session of the conference, IF awarded its annual IF award to Mr Bo Hjelt. Mr Hjelt, a father to three children with Spina Bifida, has dedicated his life and the resources of his foundation to research into the real causes of Spina Bifida. He has been a board member of IF during 8 years, and has organised events to raise funds for the International Federation. Mr Hjelt received a statue, sculpted by artist and IF-president Pierre Mertens. Read the announcement of the IF President, Pierre Mertens

2005 award for Dr Ben warf
Dr Ben Warf

The International Federation for Spina Bifida and/or Hydrocephalus (IF) is the umbrella organisation representing national organisations for Hydrocephalus and Spina Bifida (*) on a world wide level.
Each year, the Federation presents the IF-Award to an individual or organisation in recognition of the special contribution they have made in the service to people with disabilities in general or to people with Hydrocephalus and Spina Bifida in particular.

By unanimous decision of the International Board, it has been decided that the IF Award for the year 2005 will be given to Dr. Ben Warf.
10  years ago, IF started a pilot project for early intervention, treatment, rehabilitation and follow-up of children with Spina Bifida and Hydrocephalus in Africa. The aims of this IF project in Africa are to prevent Spina Bifida and Hydrocephalus as much as possible, and improve the lives of persons with these conditions and their families, by organising appropriate training, surgery and rehabilitation, through existing medical, therapeutic and community based services in the different partner countries. Dr. Warf  has been a partner from the beginning and became an IF Medical Consultant on neurosurgery.

Dr. Warf will receive this award for his thrusting back the frontiers of knowledge for the treatment of Hydrocephalus in Africa. This year the Journal for Paediatric Neurosurgery published two articles written by Dr. Warf. One was regarding the results using ETV as the method of treatment for children with Hydrocephalus. The second article compared the expensive Codman shunt with the much less expensive Indian Chhabra shunt. As Medical Director and Chief of Surgery at the CURE Children's Hospital of Uganda he developed an achievable neurosurgical program for the treatment of Spina Bifida and Hydrocephalus. Dr. Warf knows how to translate the latest technology into a useable system for Africa. He is also very involved in transferring this knowledge to local physicians. This has resulted in the Cure PATH Programme. This is a training program which transfers the results obtained in Uganda to other countries and regions. With his dedication to treat children with Spina Bifida and Hydrocephalus in Africa, Dr. Warf is crossing borders all the time thereby influencing medical practice worldwide.

The International Federation motivated its decision by saying that the driving force of Dr. Warf is to fight for the poorest of the poor, like the disabled people in Africa, for those that may otherwise be denied the benefit of health services. The high quality of service in his hospital resulted in important advances in the treatment of hydrocephalus in Africa and world wide.

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 Award will be officially presented to Dr. Warf on June 27, 2005 at the opening session of the 13th  World Conference  for spina bifida and hydrocephalus in the Hyatt Regency (1300 Nicollet Mall), Minneapolis,  in the presence of the IF president, Mr Pierre Mertens and handed over by doctor Karin Muraszkowho herself has  Spina Bifida. 

2004 award for Ryggmargsbrokk- og Hydrocephalusforeningen
Eli Skattebu for Ryggmargsbrokk- og Hydrocephalusforeningen

Each year the prestigious  IF Award is presented 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 Spina Bifida and/or Hydrocephalus 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.

It therefore gives IF great pleasure to announce that the Award for the year 2004 has been presented to the Ryggmargsbrokk- og Hydrocephalusforeningen by unanimous decision of the international Board.

Ryggmargsbrokk- og Hydrocephalusforeningen is the Norwegian association for Spina Bifida and Hydrocephalus.

The Norwegian association has achieved wonderful results in their own country including playing a leading role in establishing the centre TRS.   From the beginning, the excellent work carried out  in Norway has been shared with the international community, by  playing an important role in our federation. Otto and Moyna Berg and more recently Runa Schoyen have been active members of the IF board.

On the establishment of the IF projects in developing countries the Ryggmargsbrokk- og Hydrocephalusforeningen showed their solidarity immediately, not only with  fundraising campaigns, but also the lobbying of their government , Norad, and Atlas Alliance resulted in the financial input IF needed to succeed in this new challenge. The Norwegian association was closely involved in the entire process and motivated African parent groups to grow and fight together for their children. The whole association supported African solidarity and many of their members are involved in training and exchange projects in East Africa.

To our knowledge, Ryggmargsbrokk- og Hydrocephalusforeningen was the first member country to elect an adult with spina bifida to lead their association - another progressive act  which has been an example for others world wide.

With this award IF expresses its great appreciation for the work done by Ryggmargsbrokk- og Hydrocephalusforeningen in improving the life’s of many children and adults with hydrocephalus and spina bifida in Norway, in Africa and world wide, and wishes them well in the next phase of their valuable work, as they move into their new official office.

Pierre Mertens
IF President

2003 award for Geert Vanneste
Geert Vanneste

Back in 1993, when IF first came to the African continent, it worked together with a Dutch NGO and a local neurosurgeon who operated on children with Spina Bifida in Nairobi.

At that time we were organizing a training seminar on the handicaps we were representing. Spina Bifida and Hydrocephalus are two complex handicaps, whereby care starts with the treatment of the hydrocephalus. In order to do this a silicone tube has to be inserted which diverts the excess water under the skin back to the abdominal cavity. We call this device a shunt and this little thing was not available in Africa.
If imported these shunts into Africa because without treatment the handicap for these children would have become much more severe.

The surgeon invited several people to this workshop. One of them was Geert Vanneste, who is an expert in Community Based Rehabilitation or CBR. The problem is that after insertion of the shunt not all problems have disappeared. Our first concern was to operate these kids sooner than later so brain damage and blindness could be avoided. CBR was in a position to locate these kids on a timely basis and was in a position to ensure aftercare.

Geert gave an excellent lecture on how the local African health systems achieved CBR.
Using a blackboard   he drew a picture showing how CBR was to reach the local communities. This was a long chain of organizations and services. The higher up the chain the more luxurious the offices became. All the way from air-conditioning down to a broken electric fan.
However at the end of the chain he drew a mother with a handicapped child. Lonesome and without any help.
Geert cried out that CBR should be community driven and completely free of charge.

He turned against the new NGO’s because they made the same mistakes as the first ones. He fought for paid CBR workers. They need training and if you do not pay them they will not stay on.
The audience looked baffled. We at IF felt like one of these new NGO’s. In addition we had invited people from several ministries and the Dutch only worked with voluntary workers and did not invest in training.
The audience took note but the applause was meagre. During the break, a surly Geert retreated to one of the tables in the back. I joined him because I felt that this was a guy I needed. As a father of a child with Spina Bifida and Hydrocephalus how one could find oneself standing at the end of the chain with all your needs and wants.

During the entire lecture I heard and felt how Geert defended these mothers. When a mother walks for hours carrying a child on her back looking for medical help, she is entitled to adequate assistance.
10 years have passed. IF now supports 7 projects in 6 countries and operates on more than 500 children a year. They take care of the aftercare and solve where possible complex problems with simple and affordable methods.

Geert has been instrumental in guiding these efforts. He has placed his expertise and his network at our disposal voluntarily. He also put Spina bifida and hydrocephalus on the map at CBM. They all have been projects which started at the end of the chain; the needs of handicapped children in Africa. It became a project with many ups and downs. However, what we achieved will not go away and remain were it is.

Together with Geert we intent to initiate new projects in order to ensure that children with Spina Bifida and Hydrocephalus are being cared for.
The first 10 years of our co-operation have been fascinating. Geert’s drive is fuelled by the people at the end of the chain. Not by ministries, not by donors but by the mothers with handicapped children in Africa. That’s why the IF 2003 award is for Geert Vanneste. He earned it. Congratulations.

Pierre Mertens
December 2003

2002 award for Björn Rundström
Björn Rundström

The IF Award for the year 2002 went to Mr Björn Rundström from Sweden by unanimous decision of the international Board.
Björn Rundström, is founding president of IF and elected president of honour for life when he stepped down in 1995.
In 1993 he took the initiative to also work in developing countries. From the beginning he was the driving force of the IF magazine Federation Focus later BackUp and was the editor until it was replaced by the IF Newsflashes by e-mail in 2002.


2001 award for Dr Carla Verpoorten
Dr Carla Verpoorten

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’.

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..


2000 award for Hans Hoegh
Hans Hoegh


1998 award for Guro Fjellanger
Guro Fjellanger

Something quite special for people with spina bifida happened in Norway in 1997. We got a minister who has spina bifida herself, something very special for Norway and I suppose on the whole world.

Last autumn there was a parliamentary election in Norway and the old government had to step down. A new cabinet was formed and in its midst we found Guro Fjellanger. Guro is 33 years old, born with spina bifida. She has been a board members of the Norwegian spina bifida organisation for some time. During the last years, she has been an outstandin g person in our society with several commissions and tasks and we knew she might become a Minister in the new government as a result of the election.
We were very happy and proud when newspapers and television showed pictures of her coming from the Royal Residence with the rest of the Ministers after being asked by the King to form a new government after the final results of the elections.
Guro used crutches and balancing a heap of flowers and herself in front of a lot of people, television and radio stations with no problem, made us all impressed. that is not the only thing, mind you, that impresses is about Guro.
She has been in office now for nearly half a year and is doing a very good job whether you agree with her political view or not. In the middle of January the IF board had the board meeting in Norway. On the programme was a visit to Guro Fjellanger. She was very happy to meet the Board of the International Federation and the board members found it a very good, constructive and inspiring meeting. The Board had the opportunity to tell her about the work of the federation and especially the projects in Africa.
Pierre Mertens thanked the Minister for her hospitality and for being such an outstanding example for all people with spina bifida and their families. He told her how much it meant to all of us to see a person with a disability obtaining one of the highest positions in society.
As a retribution for all the work she has done and for being a splendid door-opener for the other persons with a disability, the President presented her with the IF award.

1997 award for Jim Begg

Mr Jim Begg,  President of BLD Europe receives the IF award at the general meeting of Bonn, 1997. Mr Begg and his team of BLD have given IF an invaluable help to develop the new look for the federation.
in 1996, Bo Hjelt called his old American friend, who was then President of a Brussels based pan-European advertising agency, for some help and guidance in giving IF a professional facelift.
Jim Begg was ready to help IF and installed a special Task Force team to develop a new look, including a logo, visiting cards and letterhead. Commenting on the work that BLD Europe had done for IF, Begg said: “all of us at the agency have enjoyed working on this special project because we know that all time and effort we put in contributed to a very worthy cause, namely helping those who suffer, to help themselves”.


1997 award for Mami Kawasaki,
Mami Kawasaki

Mrs Mami Kawasaki has given IF a major financial support and was given the IF award by the President when he visited Japan. Mami Kawasaki has started flower schools in Japan and when she was presented the award, she said:” I don’t want to be thanked, I am so happy to be in a position to help”.


Bo Hjelt IF Award 2006 speech president

“The future is now” is a good theme for our next conference
which will focus on prevention.
Before planting the seeds…… so people should be advised to take folic acid before conception.

Today I would like to honour
with the annual IF award,
one of these devoted individuals
in our network
who, made a real difference
in the research on the causes of neural tube defects.
Bo Hjelt is a business man
who was confronted in his own family
with 3 children with Spina Bifida.

He decided to invest in research
by creating the CDI foundation. This foundation received 2% from Bo Hjelts total worldwide business revenue.

I got to know about the CDI foundation as an artist visiting a Belgian Art collector.
After the art business we spoke about spina bifida.
The art collector said “Spina Bifida”! That is Bo Hjelt!

Years ago I contacted Bo and asked him to help IF financially.
As it goes when a parent meets another parent,
the contact was immediately warm  and open.
Our first workshop in Africa was sponsored by Bo’s own money and not from the foundation.

He made his complete network available
to our organisation,
and he accepted to be a member
of the IF board for many years.
Also now he is still a member of the management commission of our organisation.

Bo Hjelt is the IF award winner for 2006;
here in Finland, the country that nominated him for many years to the IF board

For many years the IF award was a statute
made by Olaf Ollovson, sponsored by Bo Hjelt.

So, for Bo I made a special new award myself,
symbolising  Spina Bifida, revention and pregnancy.

It started with art and many years later it is art again.
Bo Hjelt IF Award 2006


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