Newsflash: International Spina Bifida

Workshop in Moshi
On 20 and 21 November, IF organised a very successful workshop on the "management of the neurogenic bladder in children with spina bifida and spinal trauma" in close cooperation with the different partners from the projects in Africa. The workshop was organised at the KCMC (Kilimanjaro Christian Medical centre) and in cooperation with CCBRT Kilimanjaro. Participants from Tanzania, Uganda, Zambia, Malawi, Kenya, Rwanda, Nigeria, Sudan, Peru, Norway, Sweden and Belgium attended the workshop. Professor Kessi, provost of KCMC opened the workshop with an excellent lecture. Read the opening lecture Prof. Kessi. Read the opening lecture Pierre Mertens.

Parent meetings in Tanzania
On Tuesday 18 November, parents and their children came together at the CCBRT Disability hospital in Dar es Salaam. All were impressed by the testimony of 3 young adults with Spina Bifida from Dar es Salaam. The young adults started CIC in the hospital programme at the beginning of this year and shared with us that this was one of the biggest changes in their lives: finally safe, dry and without any smells! On Saturday, parents from the Moshi region came together and shared experiences with parents and healthcare workers from other countries. We thank all the parents that spent these days with us!

Cooperation in Ethiopia
IF has had a fruitful meeting with Mr Getahun, a parent of a child with spina bifida and hydrocephalus, living in Addis Ababa, Ethiopia. Mr Getahun was in Brussels for business and combined this with a visit to the IF office. As a parent of a child with spina bifida and hydrocephalus, he is interested in forming a group together with other parents, so they can share experiences and fight for the rights of their children. The CBR project in Addis Ababa received 5 Chabbra shunts from IF to help children with hydrocephalus who's parents cannot afford to pay for the shunt. We look forward to receiving more news from Ethiopia!

The Disabled People's Parliament
Olga de Wit from the Netherlands represented IF at the disables people's parliament held from November 10 thru 11 in Brussels The disabled People's Parliament consists of disability representatives from across Europe,( including the "new" countries), European parliamentarians, national parliamentarians and other EU institutions such as the European Commission, Italian Presidency, ECOSOC and the Committee of the Regions and Social Partners. IF-Europe also participated. The event was conducted in the "format" of a regular parliament and took place in the European Parliament seat and included interventions from the floor.Read More

The Basque Spina Bifida Association
On November 21, ASEBI, the Basque Spina Bifida Association, held a series of scientific meetings designed to discuss the problems associated with Spina Bifida and the changes that are occurring. These meetings were dedicated to patients and their families, healthcare professionals, education and social services and everybody working in the field of disability, the final objective being the effective inclusion of all people with a handicap into society.

Two wonderful boys
Brian Madsen, President of the Danish Hydrocephalie & Spina Bifida organisation sent us some very good news. His wife gave birth to twin boys, Frederik ,weighing in at 1780 grams and Nikolay at 1630 grams. These two wonderful boys really make it a large family. They were born 7 weeks too early. After three months of hospitalisation, mother and children returned home on November 5. All are in good shape. In the name of IF, we wish the family a full and wonderful life together. Congratulations Brian.

Fathers of invention
This is the story of two dedicated fathers who, despite very different backgrounds, had the courage and determination to do something to help their sons. One child, Casey Holter, passed away in the country where his father, a machinist in Pennsylvania USA, developed the first valve ever. The other, Theo Dahl, son of famous best-selling UK author Roald Dahl, had received one of Mr. Holter's valves. The Dahl family moved back to the UK where his valve began to develop trouble. In the UK this valve was improved which is the reason Theo Dahl is still with us. An excellent essay which proves how inventive people can be when it comes to saving lives. Read More

Marc Herremans two years later at the Ironman
The Belgian triathlon athlete, Marc Herremans, once more participated at the Ironman and reached the finish. Two years ago Marc participated for the first time and finished 6th at the 3.8 km swimming, 180 km cycling and marathon events. The difference between now and two years ago is that Marc now is a wheelchair user. The reason is that nearly two years ago he broke his back whilst training. Marc now supports neurosurgery research. Congratulations Marc!!

News from Portugal
For the European Year of People with a Disability, the Portugese organisation ASBIHP, wanted to inform the Portugese about the benefits of Folic Acid as prevention for Spina Bifida.They developed new leaflets about ASBIHP and a campaign on Folic Acid with brochures and posters, which they sent to universities, Health Centres and Hospitals in Portugal. They will be hosting a conference in Lisbon on Spina Bifida and Folic Acid on November 21 with a video conference to the Portugese Islands of Madeira and Azores. Teresa Cole, IF Board Member, will be talking about the international experience with the implementation of Folic Acid at this conference. On November 15, they will also be hosting a small conference ' Educate to Autonomy' for parents of children with Spina Bifida to explain to them the importance of teaching your child to be more autonomous.

Congress in Turkey
In September, Turkish Association for Spina Bifida (Spina Bifida Dernegi) successfully organized its third annual national congress in Ayvalik, Turkey. There were more than 200 attendants, with a busy educational and social programme. There were representatives from all around Turkey. The association has rapidly grown after its start up in 1997, and now has 5 branches in larger cities of Turkey, with a total member number of over 800. Our society is mainly dealing with community education particularly on primary prevention via Folic acid, and the problems of people and families living with spina bifida. We are currently working on a project to enrich bread with folate. Bread is consumed in large quantities in Turkey, and it may be an effective way to reduce the still high incidence of spina bifida in our country. Spina Bifida dernegi conducted a study in Izmir area in 2000 where 37000 registered births throughout the year were examined for spina bifida, and the incidence was 1.5/1000. This is probably higher in the less developed parts of the country.

News from Brazil
Brazil is a large country with almost 170.000.000 inhabitants. Rio de Janeiro accounts for more than 14.500.000. We do not really know how many people in Brazil have a physical disability. However it is easy to understand that the majority of these people are in need of adapted means of transportation. This in itself is a big problem for the disabled. In Rio de Janeiro, few subway stations have wheelchair accessibility and there are no regular adapted buses running in the city. Although a law exists, unfortunately citizens' right to public transport is denied simply due to the financial interests of the bus owners. According to them the cost to adapt the vehicles does not justify the number of users. For disabled people, to cope with public politics still is a struggle. They continuously ask themselves: don't we exist? This disturbing news came from the President of the Associao de Espinha Bifida e Hidrocefalia do Rio de Janeiro. For more detailed information on this organisation, go to http://www.aebh.kit.net

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