Duchenne and the Brain

On Saturday, June 2, the fifteenth Duchenne Day 2018 took place in collaboration with the centre for neurological learning and development disorders Kempenhaeghe in Heeze. More than 200 people attended this meeting, organized by the Dutch Duchenne Parent Project. DPP organizes annual meetings where families, researchers and doctors and other practitioners such as teachers and physiotherapists meet. This year’s theme was ‘Duchenne and the brain’.

Although Duchenne de Boulonge already mentioned brain involvement in the description of the clinical picture in 1868, it was only until the last decade that attention has been paid to these aspects, instead of muscle disease only. The main focus was always on muscle weakness, and hardly on the brain. Reading disorders, autism, attention deficit disorders and epilepsy are seen more often in this disease than in healthy people.

Since 1996, the Duchenne Parent Project has put this aspect of the disease on the map by sponsoring research in this area, by providing information to parents and by publishing a handbook (hyperlink to book?) Which has been translated into 10 languages. All this thanks to and in close collaboration with professor Jos Hendriksen, (clinical neuropsychologist), and expertise centre Kempenhaeghe.

In recent years, research has also been conducted into the function of the missing protein in the brain, sponsored by the Duchenne Parent Project, with the use of MRIs of the brain. This research took place in collaboration with the LUMC, Kempenhaeghe and the University of Newcastle.

In addition to the cause of brain involvement, the Duchenne Day also looked at treatment options and options to support the boys and men. This goes from controlling computers through brainwaves, to forming a support team around the boys. Too many problems are now detected too late and valuable time is lost. Early testing for possible learning problems is crucial and will have to become the national standard.

Professor Jan Verschuuren (neurologist, LUMC) received the Duchenne Award 2018 thanks to his dedication and dedication to Duchenne, and his coordinating role as chairman of the Duchenne Center of the Netherlands and ALADIN (All Against Duchenne In the Netherlands).

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