Spain first country to submit its initial report to the CRPD Committee

All States parties that have ratified the UN Convention on the Rights of Persons with Disabilities (CRPD) are obliged to submit regular reports to the CRPD Committee on how the rights are being implemented. States must report initially within two years of accepting the Convention and thereafter every four years. The Committee examines each report and can make suggestions and general recommendations on the report and shall forward these to the State Party concerned. The Optional Protocol to the Convention gives the Committee competence to examine individual complaints with regard to alleged violations of the Convention by States parties to the Protocol. Spain was the first country this year to submit its initial report to the Committee and was recently followed by Tunesia and Peru. The reports will be discussed in the next Committee meeting, October 4-8, 2010 in Geneva. The Committee has issued reporting guidelines to advise States Parties on the form and content of their reports.

The 4th session of the Committee of the Rights of Persons with Disabilities will be held in the Palais des Nations in Geneva, Switzerland

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

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

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

Question parlementaire sur la prévention des défauts de tube neural en Europe

Le 27 janvier, Dr. Antonyia Parvanova, Estrela Edite et Ria Oomen-Ruijten, parlementaires, ont participé au lancement du Rapport Bayer Schering Pharma "Act against Europe's most common birth defects" au Parlement européen. L'objectif du rapport et de l'événement était d'attirer l'attention sur le progrès décevant de réduire le nombre de grossesses affectées par des anomalies du tube neural (ATN) en Europe et de relancer le débat sur l'importance pour les femmes en âge de procréer de consommer des niveaux adéquats de folate. Suite à cette campagne, les trois députés européens ont conjointement posé une question écrite à la Commission européenne. Entre autres, ils demandent à la Commission si elle a pris note noté les résultats décevants et si la Commission reconnaît et soutient la nécessité d'un niveau suffisant de folate pour les femmes en âge de procréer au cours de la préconception et au début de la grossesse. Ils s'enquièrent également si la Commission est disposée à commencer à mettre en application des campagnes de sensibilisation pour réduire ATN. Pour plus d'informations, visitez le site Web de PE.

Dr. Antonyia Parvanova est l'un des membres du Parlement européen qui, avec Edite Estrela et Ria Oomen-Ruijten, travaille activement à réduire l'incidence des défauts de tube neural en Europe

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.

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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