english español français nederlands português italiano
International Federation for Spina Bifida and Hydrocephalus
home search sitemap contact disclaimer
International Federation for Spina Bifida and Hydrocephalus - Homepage

Newsroom archive

Subscribe to our newsletter

Unsubscribe from our newsletter

 

Newsroom

What's new?

Closing Speech - Pierre Mertens - at Crossing Borders

 

Closing session
Pierre Mertens

Dear Friends

We crossed borders, had good and open discussions and  strengthened our efforts towards a better life of persons with Spina Bifida and Hydrocephalus

 


Some examples:
1. We crossed the North – South borders and the North learned from the South. They learned from the simple but achievable solutions developed in the South, but also from scientific research done in Uganda where it has been proven that  75% of the new born children with Spina Bifida can stay shunt independent with ETV in combination with CPC
2. In TRS they have crossed borders in the relationship between users and professionals
3. Studies are being completed on our quality of life. 98 % responded positively on the statement ‘I enjoy life’. I can tell you that this is much higher than the rest of the population.
4. The presence of Mrs Sobkoviak, president of the Research Society, is a big step forward in crossing borders between users and professionals on an international level. We agreed to put the cooperation between the Research society and IF on the agenda of both organisations.

It is clear that the quality of our lives is influenced by the positive progress in medicine.

But even more important for our quality of live is to have
- FRIENDS
- Family ( remember the testimony of Brian yesterday stating that his child with Spina Bifida made him a family person and that he felt this as an improvement of the quality of his life as a parent.
- Knowledge of your own condition ( remember Kristina’s testimony on how the knowledge of her cognitive problems improved her life)
- A meaningful life
- And as an artist I would like to add art, music and love.

We crossed borders
with the increasing input of adults in our organization,
and by the many new contacts and friends we have made.

We can say that here in Oslo
We, the international Spina Bifida and Hydrocephalus community,
became stronger.
This is good and needed.

We need to speak in one voice
and therefore I really welcome
the increased input of our friends from Africa, Latin America, Australia and from the SBAA in America.

This is needed in a changing world
where the majority of the society
including the majority of the medical professionals
is looking at a life with Spina Bifida
as being  meaningless and painful
those thoughts should be eliminated.

The knowledge of
and services to persons with Spina Bifida and Hydrocephalus will decrease.
Already now young doctors lose interest in Spina Bifida
because they think the problem is solved.

I’ll go back home from this conference
with energy
to go on in the fight for dignity and respect
for children and adults with Spina Bifida and Hydrocephalus.

A fight that can be compared with the fight of
Greenpeace or Amnesty International.

I fight for the right to be different.

I thank the hosting country for this warm and positive conference.
 
Next year I want to see all of you
at our conference in the USA organized in cooperation with the SBAA conference.
These American conferences are real family events.
Take your partner and your kids around the table
and plan your annual leave now,
make a good sponsoring dossier,
to make it financially possible.
You will not regret it.

See you all next year.

 

More articles

7/02/2008 IF international ListServ
3/09/2008 Medicina e Persona Rimini Meeting 2008
2/06/2008 Endoscope installation at Hue Hospital, Vietnam
2/03/2008 Dutch Health Council advices on optimal use of Folic Acid
12/02/2008 IF visit to the Ugandan Parliament
11/02/2008 Introducing Olivia Nakato
12/02/2008 The gift of Deep Experience
11/02/2008 Introducing Rebecca Nakitto
11/02/2008 IPATH training in M'bale, Uganda
17/01/2008 AVSI and IF cooperate in Uganda
12/11/2007 IF-FFI meeting on mandatory fortification
25/10/2007 Luis Quaresma (Portugal) reports from Angola
11/10/2007 PRACTICAL DETAILS IF–FFI MEETING ON PREVENTION
25/06/2007 Endoscopic Third Ventriculostomy in progress
21/06/2007 Africa and "our" children
31/05/2007 Stories from Africa
11/05/2007 Clean up awareness campaign organized by SHAK - Nairobi
9/05/2007 5th International NTD Conference
6/04/2007 IF training visit in Vietnam
6/04/2007 Training in the Go Vap orphanage
2/04/2007 WHO seeks disability experts through IF
20/02/2007 PhD study on the effect of Spina Bifida on parents
18/01/2007 Home visits in Moshi area
9/01/2007 Trolls and spina bifida
4/01/2007 The Independent Living Center and Munishwor Society of Katmandu, Nepal, established a special contest
22/12/2006 not feeling alone…
13/12/2006 UN adopts Disability Convention
26/10/2006 Proposal for mandatory fortification of bread approved
25/10/2006 Conference Medicina e Persona, Italy
19/10/2006 article Clementina Isimbaldi for the Italian newspaper Libero
16/10/2006 Dear Friends of CCBRT
10/10/2006 without creating an NGO island…
10/10/2006 Short report from Poland
10/10/2006 Preventing Spina Bifida through Folic Acid Flour Fortification
4/09/2006 Dutch physicians succeeded in bringing back feeling in penis
23/08/2006 Elections are Congo's hope
7/07/2006 Resolution on active termination of life of newborn children with impairements and the right to live
12/04/2006 UK wants to improve folate status young women
4/04/2006 Update on IF's Campaign for Mandatory Food Fortification
31/03/2006 CIC treatment in Vietnam
30/03/2006 Update on the IF Conference in Helsinki
28/02/2006 1st national update on Spina Bifida and Hydrocephalus
19/01/2006 New study comparing two hydrocephalus treatments in Africa
18/01/2006 IF President to attend First National Conference in India
18/01/2006 IF lobbies Irish MEP for mandatory flour fortification
19/12/2005 IF and its Dutch member BOSK lobby against the “Groningen protocol”
19/12/2005 Oldest person with spina bifida
15/11/2005 IF's African workshop
10/11/2005 Ireland's IASBAH and IF towards European Food Fortification
10/11/2005 Meeting with Dutch physicians de Jong and Kompanje
24/10/2005 BBC Radio 4 programme on spina bifida in Guatemala
18/10/2005 NEW Publication from the Spina Bifida Association
12/10/2005 Tom Baroch reports on the situation in Guatemala
28/09/2005 Training in Thailand
28/09/2005 Second conference: "Building Bridges"
28/09/2005 A National Live Satellite Broadcast and Web Cast
28/09/2005 WHO resolution
28/09/2005 Meet Up!
28/09/2005 New staff in the Brussels IF-office
4/08/2005 July 27, 2005: Adult day
15/07/2005 IF adopts two resolutions to the United Nations
12/07/2005 32nd SBAA and 16th IF Conference, Minneapolis, 26-29 June 2005
13/06/2005 A long process to become adult for disabled teenager
27/05/2005 Ethics workshop
18/05/2005 Workshop on ethics with new accessed EU countries
17/05/2005 IF voices its opposition to European Parliament report on food fortification
14/03/2005 IF voices its opposition to European Parliament report on food fortification
14/02/2005 MY SON IS A NORMAL CHILD
13/02/2005 THE IMAGE OF SPINA BIFIDA IS INCORRECT
13/02/2005 EUTHANASIA ON CHILDREN WITH SPINA BIFIDA IS MURDER
13/02/2005 Bosk: No legal or policy-making room for active euthanasia
21/01/2005 Revolutionary advance in medicine
29/11/2004 LIESJE
26/11/2004 Supporting disabled adults as parents
24/11/2004 IF African workshop: welcome word Pierre Mertens
29/10/2004 Disabled people’s costs of living in UK: ‘More than you would think’
13/09/2004 crossing Borders - opening speech - Eli Skattebu
8/09/2004 Emily's letter to the President
8/09/2004 Crossing Borders - Opening Speech
6/09/2004 IF award 2004
6/09/2004 Closing Speech - Pierre Mertens - at Crossing Borders
6/06/2004 opening speech Pierre Mertens at the concert
29/05/2004 Friends Of IF
5/04/2004 ETV as the primary treatment of Hydrocephalus

subscribe to our newsletter

 

 

IF Neurosurgery

Flour Fortification Initiative

Council of Europe

Include Everybody

European Year of Intercultural Dialogue

IFSBH Annual Report 2007

Global Partnership for Disability and Development

Folsaeure

International Disability and Development Consortium