Incontinence Coalition Canada
The Canadian Continence Foundation and the Spina Bifida and Hydrocephalus Association of Ontaria and many other respected and well-known organizations that represent Canadians affected by incontinence have formed the Incontinence Coalition. They have started an awareness campaign urging greater recognition and de-stigmatization of this condition. They have send a letter to Federal and Provincial Ministers of Health encouraging them among other things to publicly acknowledge the condition and improve access to treatments and medical supplies. The Incontinence Coalition's consensus statement can be read here.
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Incontinence can impact all aspects of a person's life |
LIESJE ("Words") now available in EnglishIn 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. |
The English translation of LIESJE ("Words") can be ordered at Blurb.com
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Smurf genes help cells to their proper destinationTwo critical genes that serve as beacons and give cells a much needed sense of direction in the chaotic days of early development have been identified by researchers at the University of Toronto. The new findings, from the laboratory of Jeffrey L. Wrana , a Howard Hughes Medical Institute international research scholar, were published April 17, 2009, in the journal Cell , and help explain how a cell determines its sense of space. A better understanding of this phenomenon, called planar cell polarity, may also help scientists learn how improper cellular orientation can lead to spina bifida, polycystic kidney disease, and metastatic cancer. Read more here . |
The journal "Cell" contains research about Planar Cell Polarity
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European legislation to protect against discriminationThe European Commission has proposed a Council Directive on implementing the principle of equal treatment between persons irrespective of religion or belief, disability, age or sexual orientation. The existing European legal framework applies only to employment, occupation and vocational training. The proposed legislation will apply outside the labour market. The Commission's proposal has to be agreed under the normal legislative process (consultation procedure with the European Parliament and unanimity in Council) before becoming law and finally being implemented in the national legal systems of each Member State. On March 16, 2009, the Committee of Civil Liberties, Justice and Home Affairs will vote on the proposal. It will be put to the vote in plenary in April. |
The Members of the European Parliament will cast their votes on important legislation against discrimination
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Low vitamin levels could raise risk of Spina BifidaFolic acid fortification is able to reduce neural tube defect prevalence by 50% to 70%. Since it is unlikely that fortification levels will be increased to reduce neural tube defect prevalence further, Irish researchers set out to identify other modifiable risk factors. They focussed on the vitamin B12, because it is metabolically related to folate and previous studies showed that mothers with a low B12 status early in pregnancy had a higher risk of a child with Spina Bifida. The Irish study confirms these findings. Women with the lowest levels of B12 were almost five times more likely to deliver a child with a neural tube defect. The researchers were also able to show that these higher risks were separate to the known dangers of having low levels of folic acid before getting pregnant and in the first weeks of pregnancy.
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Recent Irish research shows that low vitamin B12 levels are associated with the development of neural tube defects |
Mediterranean diet seems to reduce the risk of spina bifidaRecent study results from The Netherlands were published in BJOG , an international Journal of Obstetrics and Gynaecology, volume 116, Issue 3, pages 408-415. Dr. Regine P. M. Steegers-Theunissen of the Erasmus Medical Center in Rotterdam and colleagues compared the dietary pattern of mothers with and without a child with Spina Bifida. Women who followed a Mediterranean diet were less likely to have a child with Spina Bifida. Characteristic of a Mediterranean diet are joint intakes of fruit, vegetables, vegetable oil, alcohol, fish, legumes and cereals, and low intakes of potatoes and sweets. The Mediterranean diet resulted in higher blood levels of folate and vitamin B12. Read more here.
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Fruit, vegetables and vegetable oils contribute to a healthy pregnancy
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IF and Latin AmericaIF is joining efforts to build up the network in Latin America, specifically with organisations in Spanish-speaking countries and Brazil. As part of this project, IF is developing an investigation that concerns research of all organisations for Spina Bifida and Hydrocephalus in Latin America, and all surgical progress, medical information and incidences in the region. When national and regional organisations are united in the IF network, the voice of people with Spina Bifida and/or Hydrocephalus could be heard in more places. This is an important step to improve the quality of life of those with SBH and their families in Latin America. For any information, opinion or suggestion, contact the following addresses:
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IF wants the voice of people with Spina Bifida and/or Hydrocephalus in Latin America to be heard too
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