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Appointment Special Advisor for International Disability Rights in the US
The Bureau of Democracy, Human Rights, and Labor announces the appointment of Judith Heumann as the Special Advisor for International Disability Rights. This position was announced last summer, when President Obama and Secretary Clinton declared that the United States would sign the Convention on the Rights of Persons with Disabilities (CRPD). Among others Special Advisor Heumann will lead the US Administration’s efforts to develop a comprehensive strategy to promote the rights of persons with disabilities internationally and coordinate an interagency process for the ratification of the Convention on the Rights of Persons with Disabilities. In March 2010 the Minnesota-based nonprofit Courage Center announced that they will grant Heumann the 2010 Medtronic National Courage Award this September. Heumann was selected for the 2010 award in acknowledgment of her lifelong advocacy on behalf of children and adults with disabilities. |

Judith Heumann had polio at the age of 18 months and became the first wheelchair user to teach in the New York City public school system
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Raising public awareness of Spina Bifida
On August 29, 2009, Laura Tellado, a young woman of 22 years, started the blog "Holdin' out for a hero" with the message "My voice will be heard". She made no false claim. Since that first message, she has been writing in her blog almost daily. And more than that. At the same time she has been writing to potential "heroes", asking them to support her cause. Born with Spina Bifida and living with it every day, she became determined to raise public awareness of Spina Bifida. She is convinced that a high-profile national spokesperson can make all the difference in making Spina Bifida more visible. She set out to try to and write at least one letter or email a day to a prominent public figure to see if they would help to raise awareness of Spina Bifida. She has also written a guest post for Hispanosphere, a blog on the Orlando Sentinel website and her quest was featured in an article by Christina Hernández. Will you be her hero? |

On her blog Laura also answers frequently asked questions she received about her life with Spina Bifida
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FEBHI delegation has private audience with Princess of Asturias, Spain
Her Royal Highness the Princess of Asturias, Letizia Ortiz Rocasolano, received a delegation of the Spanish Federation of Spina Bifida and Hydrocephalus Associations (FEBHI) at the Zarzuela palace on the outskirts of Madrid. The meeting was organised by the president of the Federation, Mrs. Carmen Gil Montesinos, who wanted to explain about the FEBHI project, "Spina Bifida at school". The princess greeted every member of the delegation personally and posed with the delegation for the assembled media. Next the meeting went on behind closed doors, where the princess listened to people's specific needs and to what it is like to live with Spina Bifida and Hydrocephalus. She also learned what the Spanish federation is doing to improve the lives of its members. Princess Letizia expressed her support to the members of the delegation. |

People with Spina Bifida and their families, all members from FEBHI, had a special meeting with Princess Letizia of Asturias, Spain
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Parliamentary question about the prevention of neural tube defects in Europe
On January 27th parliamentarians Dr. Antonyia Parvanova, Edite Estrela and Ria Oomen-Ruijten participated in the launch of the IF-Bayer Schering Pharma report "Act against Europe's most common birth defects" in the European Parliament. The objective of the report and event was to draw attention to the disappointing progress in reducing the number of pregnancies affected by neural tube defects (NTDs) in Europe and to reactivate the debate on the importance of adequate folate levels in women of childbearing age. Following this campaign, all three MEPs now have jointly posed a written question to the European Commission. Among others, they ask the Commission if it has taken note of the disappointing results and whether the Commission acknowledges and supports the need for adequate levels of folate for women of childbearing age during preconception and early pregnancy. They also inquire if the Commission is willing to start implementing awareness-raising campaigns to reduce NTDs. Read more on the EP website. |

Dr. Antonyia Parvanova is one of the Members of the European Parliament who, together with Edite Estrela and Ria Oomen-Ruijten, actively strives to reduce the incidence of neural tube defects in Europe
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Ireland's President Mary McAleese opens IF's 21st Conference
With a great thanks to IF member and hosting organisation Spina Bifida Hydrocephalus Ireland, IF can announce that its 21st Annual Conference was extremely well-attended and a huge success. Mary McAleese, President of the Republic of Ireland, gave a thoughtful and inspiring opening speech, which touched and impressed all conference attendees. She emphasized the importance of actively working together to make sure that every bit of knowledge is shared and progress can be made. The conference lectures, the adult and youth forums and the breakout sessions were very much appreciated. At the end of the first day of the conference Jan Jařab, Regional Representative of the UN High Commissioner for Human Rights, gave a speech in which he stressed the need to protect the rights of those born with Spina Bifida and Hydrocephalus. The closing address was delivered by Minister for Equality, Disability and Mental Health, Mr. John Moloney, TD. Conference photos are availabe here and here.
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Ireland's President Mary McAleese strongly advocated for cooperation between all involved in the field of Spina Bifida and Hydrocephalus all over the world
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