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International Federation for Spina Bifida and Hydrocephalus
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International Federation for Spina Bifida and Hydrocephalus - Homepage

Welcome !!

Dear visitor,

Welcome to our website. Please join the IF global network on Spina Bifida and Hydrocephalus. Sharing knowledge is the first step towards limiting the effects of a disability. Therefore we are updating this website regularly and setting up the IF Knowledge Network. Please transmit us all your ideas and experiences so we can make this knowledge available to the rest of the world.

Pierre Mertens
President IF


Hot News

Unexpected Beauty

Elvira Parravicini: following reality and opening your heart

Dr Filippo Ciantia from AVSI-Uganda and IF President Pierre Mertens were invited to speak at the MedConference 2009 in New York. The content of the conference programme was of an unexpected beauty. In her presentation, Dr Elvira Parravicini, neonatologist and assistant professor of Clinical Pediatrics at Columbia University, gave a beautiful example of how compassionate care can be provided after the birth of a child with a severe disability. Medical professionals should follow the sometimes difficult to understand reality and open their hearts to the hearts of the parents and their child.

IF's 20th International Conference - Imagine the Possibilities

Register today and be part of this unique educational event for the Spina Bifida Community

The early registration deadline has been extended until June 12! Do not miss this cost-saving opportunity! From June 30 - July 3, 2009, IF's 20th International Conference will take place in Orlando, Florida (USA). This year IF and SBA will combine their annual conferences. "Imagine the Possibilities" is SBA's 36th National Conference. Highlights are the Adult Day, Kids!Camp, the plenary session "The impact of Advocacy, Taking Action and Making a Difference", and many educational sessions. The conference is being held at the Swan and Dolphin Resort in Walt Disney World. There is a special rate for attendees. The deadline for booking rooms at the discounted rate is June 8, 2009. Read more here.

A great victory for Lucas Drobek

Lucas Drobek's film wins video competition

In April IF received the news that Lucas Drobek's short film "Bolzplatz" reached the finals in a German video competition for people with a disability. Lucas was born with Spina Bifida and loves to play football. Together with his father Lutz Meissner, he shows in a fun way what obstacles he is sometimes faced with. Next it was up to the German viewers to decide who would be the winner of the competition. Now we can proudly announce that Lucas won by a landslide! As a reward Lucas and his father will travel to the Filmfestival "How we live", in Munich. They hope their movie will be shown there as well.

Analogy between foetal screening and 20th century eugenics

Is prenatal screening really only meant to give information to parents about the child they are expecting?
In June Finnish sociologist Mianna Meskus will defend her doctoral thesis called "Science of Life", which concentrates specifically on the introduction and development of prenatal screening within maternity care in Finland. Meskus's thesis is a polemical document. Prenatal screening has become a standard procedure to detect possible chromosomal abnormalities and other congenital disorders. Next parents-to-be are faced with the decision to either terminate the pregnancy or to raise a child with a disability. Although this is assumed to be a personal choice, prenatal screening can also be perceived by society as a way to avoid developmental handicaps and the costs that they incur. Mianna Meskus' aim is to open up controversial issues for discussion. Read more here and here (scroll down for English abstract).

Ed Baroch receives Rotary Service Above Self Award

Tom Baroch (l) and his father Ed Baroch (r) meet with Petronila and Blanky and Blanky's mother Dahlia during a visit to Guatemala

Early May Ed Baroch was selected for recognition with the Rotary Service Above Self Award. Ed Baroch is the driving force behind projects in Guatemala that aim to improve the quality of life of people in difficult circumstances, most notably the ongoing Birth Defect Project. The projects are financed through the Rotary International Matching Grants Program. Wheelchairs are being donated, parents and healtcare providers receive educational material, people with Spina Bifida and other birth defects are being treated and receive information, and the project also focuses on the importance of Folic Acid to prevent birth defects. The purchase of a second endoscope, to treat Hydrocephalus, is part of the next project. Several Rotary Clubs support these projects, both in Guatemala and the United states (districts in Washington State, Oregon, Utah, British Columbia).

Towards ongoing treatment and care in Tanzania

CCBRT delegation led by Mr. Tanna at the Kijabe hospital

A delegation from CCBRT of Dar Es Salaam visited the IF project at Bethany Kids. Bethany Kids Africa opened a office under the leadership of Dr. Bransford and David Ng'ang'a is the office manager. CCBRT‘s delegation was led by Mr. Tanna, its vice president, and he expressed his appreciation for the holistic approach and high standard of service towards our target group. Bethany Kids Africa wants to expand to other African countries and Tanzania is high on their list because CCBRT ended the surgical services for children with Spina Bifida and Hydrocephalus. IF and its partners are actively looking for a solution for treatment in Dar Es Salaam.

IF visit to parent group Nairobi

Billy and Rebecca joined the meeting of the parent group

The parent group of Nairobi welcomed IF President Pierre Mertens at their new larger venue. Juliana Auma the leader of the group underlined the factor poverty for families with a child with Spina Bifida and/or Hydrocephalus. Their income generating project is moving from the cantina to craft work (on sale via the IF website soon). They look forward to cooperating in the East African Workshop that will take place the last week of October 2009 in Nairobi. The adults present at the meeting requested an adult day connected to the workshop. Mr Mertens offered the parent group a book with the story of his daughter.

ETV in adults with Hydrocephalus

Scientists conclude that ETV in adults with Hydrocephalus has a very high success rate

Endoscopic third ventriculostomy (ETV) is the treatment of choice for hydrocephalus, but the outcome is dependent on the cause of this disorder, and the procedure remains principally the preserve of pediatric neurosurgeons. The role of ETV in adult patients with hydrocephalus was therefore investigated. The research was led by Dr. Michael D. Jenkinson from the Division of Neuroscience at the Clinical Science Centre in Liverpool, United Kingdom. One hundred ninety adult patients underwent ETV for Hydrocephalus due to a variety of causes. The scientists involved conclude that the success rate of ETVs in adults is comparable, if not better, than in children. Read more in the May 2009 Issue of the Journal of Neurosurgery, Volume 100, Number 5.

First annual ISHCSF meeting - Hydrocephalus 2009

The Organizing Committee welcomes the submission of abstracts for oral and poster presentations at Hydrocephalus 2009

The International Society for Hydrocephalus and Cerebrospinal Fluid Disorders (ISHCSF) is organising its first annual meeting, Hydrocephalus 2009. The event will take place September 16-19, 2009, in Baltimore, Maryland, USA, at the Hyatt Regency Hotel. It will be the official scientific, educational, and business meeting of this newly formed organization. President of Hydrocephalus 2009 is Dr. Michael A. Williams, founder and director of the Adult Hydrocephalus Center at Sinai Hospital, Baltimore. IF's medical advisor Dr. Ben Warf will be speaking at the meeting about Hydrocephalus in the Developing World. The abstract submission deadline has been extended to Friday, May 29, 2009 at 11:59 pm Baltimore time. The deadline for early registration is June 1, 2009. More information can be found on the Hydrocephalus 2009 website.

Folic Acid may reduce the risk of premature birth

The April 2009 issue of PLoS Medicine features research by Bukowski et al.
PLoS Medicine, a peer-reviewed, international, open-access medical journal from the Public Library of Science, recently published the results of a cohort study on Preconceptional Folate Supplementation and the Risk of Spontaneous Preterm Birth by Bukowski R, Malone FD, Porter FT, Nyberg DA, Comstock CH, et al. (2009). The evidence strongly suggests a relationship between the intake of Folic Acid supplements and a considerable decrease in spontaneous premature births. Taking Folic Acid supplements for a year before conception seems to reduce the risk of very early preterm deliveries by 70%. Duration was found to be more critical than dosage. The research article can be read here.

IF president Pierre Mertens re-elected on EDF board

The EDF renewed its Board and elected its new Executive Committee

The 13th Annual General Assembly of the European Disability Forum (EDF) took place in Athens, Greece, on Saturday May 9 and Sunday May 10, 2009. EDF, the representative organisation of 65 million persons with disabilities in Europe, gathered more than 200 participants from 30 national federations and 50 European disability NGOs to elect its leaders. The meeting was opened by the President of the Greek Parliament Dimitris Soufias. The EDF President Yannis Vardakastanis was re-elected by an absolute majority. IF president Pierre Mertens was also re-elected and will remain a member of the EDF Board of Directors for the next four years. Read more about the EDF Annual General Assembly here.

Professor John Scott speaks at IF Workshop

Professor John Scott, keynote speaker at the IF Workshop in Ballinasloe, Ireland

On 11 March 2009, the Implementation Group on Folic Acid Food Fortification to the Department of Health and Children released a report in which they advised that the decision to introduce mandatory fortification of bread in Ireland should be put on hold. The safety of this initiative should first be supported by definitive data. Professor John Scott from Trinity College, Dublin, one of the members of the Implementation Group, made a special contribution to the IF Workshop in Ireland to explain the currently available scientific research that led to this decision. The Implementation Group does however agree that women who plan to get pregnant should take a daily supplement of 0,4 mg Folic Acid.

IF Workshop in Ballinasloe, Ireland

Participants from fourteen European countries took part in the IF Workshop on capacity building in Ireland

Prior to the Annual Conference of Spina Bifida and Hydrocephalus Ireland (SBHI), European members of the International Federation gathered for a workshop on capacity building, with the support of the European Commission. The participants represented 14 different countries. Aim of the workshop was to strengthen the network’s capacity to advocate and voice the concerns of the target group. The workshop was facilitated by IF president Pierre Mertens and IF Coordinator Lieven Bauwens. Concerns varied in the different parts of Europe. In Romania, medical care is in its infant stages, while other countries are focusing on raising the quality of life. Many participants gained relevant information and expected to be able to apply this knowledge in their associations. Read the draft report here.

LIESJE ("Words") now available in English

The English translation of LIESJE ("Words") can be ordered at Blurb.com

In his book "Words", the English translation of LIESJE, IF president Pierre Mertens searches for words for the life and death of his special daughter Liesje, who was born with Spina Bifida. While searching, words like disability, love, comfort, support, help, solidarity, health care, ethics, euthanasia and abortion take on a new meaning to him. The book is now available in English from the Blurb bookstore. You need to register, but registration is easy and free. Your order will be printed on demand; taxes and shipping costs are not included. All proceeds will go directly to IF. "LIESJE" is also available in Dutch, French ("Let Mots"), Norwegian, Italian ("Liesje, mia figlia") and Slovak.

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