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World-famous Mexican painter with Spina Bifida
Frida Kahlo (1907-1954) was a Mexican painter, who has achieved great international popularity. She is an impressive example of an artist whose entire life and creativity were extremely influenced by chronic, severe illness. Many of her best-known works depict her physical and mental suffering. Valmantas Budrys, head of the Centre of Neurology at the Faculty of Medicine of Vilnius University in Latvia, wrote an article called "Neurological Deficits in the Life and Works of Frida Kahlo". The article describes biographical events and works of Frida Kahlo that are closely related to neurology: Spina Bifida, poliomyelitis, spine injury, and neuropathic pain. |
Detail of "Tree of Hope" (1946) by Frida Kahlo
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Do not extend the Groningen Protocol
Dutch paediatricians are suggesting to extend the Groningen Protocol with the criterion "future unbearable suffering", claiming that the current rules do not work. Doctors fear prosecution when they end the life of a newborn with severe disabilities who is not suffering unbearably at birth, but according to them will be in the near future. Both BOSK and IF have issued press releases to show their concern and disapproval. IF's position paper on the Groningen Protocol shows that the current rules are already discriminatory. Extending the rules is unacceptable. Read the article in the Belgium weekly Tertio.
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Negative perceptions about disabilities can influence life and death decision making
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Bo Hjelt Foundation celebrates 50th board meeting
In Amsterdam the Bo Hjelt Foundation (BHF) celebrated its 50th board meeting. For 25 years the Foundation has been stimulating research by sponsoring PhD students in fundamental research in the causes of Spina Bifida. Bo Hjelt started and funded the foundation because he had 3 children with the condition. He has been a board member of IF for 10 years. The Bo Hjelt Foundation welcomed Professor Copp, who joins Professor Steegers. They are the two scientific researchers on the board. IF is represented at the foundation by its president Pierre Mertens. Congratulations on some great accomplishments! |
Bo Hjelt opens a bottle of champagne to celebrate the milestones of the Bo Hjelt Foundation
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Parliamentary questions to European Commission about Neural Tube Defects
Portuguese Euro-parliamentarian Ilda Figueiredo is an active member of the Parliament’s Intergroup on disability rights. After a meeting with the Portuguese Association for Spina Bifida and Hydrocephalus, she submitted written questions to the European Commission about the need for the EU to take a more ambitious approach against Neural Tube Defects. She stressed the benefits of folic acid (vitamin B9) and asked the Commission to provide an overview of what studies regarding the fortification with folic acid are currently conducted. She also asked the Commission what measures it is considering to support EU countries in the area of preventative health and nutrition. Her questions to the European Commission further support the case also made by the report “Act against Europe's most common birth defects” which IF recently conducted together with Bayer HealthCare. |
MEP Ilda Figueiredo (Portugal, GUE), one of the vice-presidents of the European Parliament's Disability Intergroup
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Dame Tanni Grey-Thompson recommended for the UK House of Lords
Dame Tanni Grey-Thompson is Britain’s most successful Paralympian, with 11 gold medals in wheelchair racing
to her name from the Paralympics, and 7 gold medals from World Championships. She also set 30 world records throughout her career and won the London Marathon six times. She was born with Spina Bifida and first competed as a 15-year-old in the 100 metres at the Welsh junior national games in 1984. Since her retirement in May 2007, Dame Tanni Grey-Thompson has campaigned to raise the profile of disability athletics. Since September 2008 she has sat on the Board of Transport for London where she is Chair of the Corporate Governance Committee. Now she has been recommended to become a non-party-political peer in the House of Lords. |
Dame Tanni Grey-Thompson will sit on the crossbenches in the UK House of Lords
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Act against neural tube defects in Europe now!
The event in the European Parliament, co-organised by IF and Bayer Schering Pharma and hosted by MEPs Dr. Antoniya Parvanova, Ms. Edite Estrela and Ms. Ria Oomen-Ruijten was a huge success. A great number of stakeholders from all over Europe and Members of the European Parliament were impressed by the presentations from Pierre Mertens, Dr. Hermien van der Walle (Eurocat) and Petter Feuk, a young man with Spina Bifida. Eventhough it has been scientifically proven in 1991 that the use of Folic Acid can help to prevent Spina Bifida, the number of neural tube defects in Europe has not decreased since. All eyes are focussed on the European Parliament for measures to make this happen. More information.
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Pierre Mertens (IF) and Dr. Ralf Bannemerschult (Bayer) present the report "Act against Europe's most common birth defects"
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