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Surgery workshop on Spina Bifida and Hydrocephalus in Dar es Salaam
IF facilitated a training on the surgery of children with Spina Bifida and Hydrocephalus for Pan African Pediatric surgeons (PAPSA) prior their conference "Trauma and Disability in Dar es Salaam, Tanzania. Neurosurgeons Prof. Albright (US) and Dr. Kashinga (Zambia) performed several successful back closures, shuntings and ETV/CPC procedures on Tanzanian children during a teaching workshop at MOI in Muhimbili National Hospital. The surgeons attending the workshop gained confidence in the treatment of Spina Bifida and Hydrocephalus in the African context. |
One of the children who were successfully operated on during the surgery workshop in Tanzania
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IF's international solidarity now known under the name IF Child Help
During the board meeting in Dublin IF decided to name its work in developing countries IF Child Help. In Belgium and Uganda NGOs are already registered under the name IF Child Help Belgium. It is hoped that many countries will follow. During IF's annual African Workshop in Dar es Salaam, Tanzania, parent groups from various East African countries and India were trained to become real NGOs to advocate for our children, adults and families. Sudan took the lead and became a full member of IF during IF's General Meeting in Dublin. IF invited the Indian Spina Bifida and Hydrocephalus foundation and the Mumbai parent group at the workshop in Dar Es Salaam, because IF Child Help hopes to become more active in India as well. |
Ali Almubarak, president of the Sudan association for Spina Bifida, and
his family
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We are not God
In July IF organized a panel discussion at the conference for Pan African Pediatric surgeons (PAPSA) in Dar es Salaam. IF President Pierre Mertens interviewed Eli Skattebu (Norway), Sam Wasike (Uganda) and Juliana Auma (Kenya) on their daily life experience and asked two surgeons, Dr. Karmakar (India) and Dr. Kashinga (Zambia), to react. Dr. Dan Poenaru (Kenya) reported on a quality of life study of children with Spina Bifida in Kenya. In a lively discussion several doctors stated: we are here to serve all kids. We are not God to decide who will live or not. |
IF President Pierre Mertens talks with Eli Skattebu from Norway about living with Spina Bifida
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European Commission highlights the need for Folic Acid supplementation
In response to the parliamentary question posed by MEPs Dr. Antonyia Parvanova, Edite Estrela and Ria Oomen-Ruijten, EU Health Commissioner John Dalli answers that the Commission shares their concern for the need for adequate levels of Folic Acid intake by woman of childbearing age before conception and during early pregnancy. Through the Commission's Communication on Rare Diseases, Member States are encouraged to take primary preventive actions, such as promoting Folic Acid supplementation, when possible. However, it is up to the Member States to decide whether or not they wish to introduce alternative or complementary measures such as voluntary food fortification with Folic Acid. IF and its members will continue to work on the EU and national level to keep primary prevention a top priority. Read the full answer.
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EU Commissioner for Health and Consumer Policy John Dalli
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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
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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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