The goal of our research project is to improve the diagnosis and provede a better treatment for Moyamoya. This requieres improved test methods (neurocognitive test) in a way that children play and learn while their brain functions and disorders are measured. This supports the diagnosis and treatment enormously. Children affected by Moyamoya are also supported by our Little Orphan Elf program, which supports children affected by this disease and increases public awareness. Moyamoya disease is often diagnosed before the age of 10 and affects 1-9 in 100,000 people in EU (source: www.orpha.net). This disease is more common in Asia, especially in Japan (10 times more frequent), but it affects people worldwide.
Moyamoya is a rare cerebrovascular disorder caused by blocked arteries at the base of the brain. This results in an important oxygen deficiency which produces severe disturbances in the brain. To compensate the blockage, tiny vessels are formed to promote blood flow and keep oxygen transport. In japanese, Moyamoya means „puff of smoke“, which describes properly the maze of tiny vessels visible on Angiography (medical imaging technique used to visualize blood vessels). The first symptom to appear are stroke, weakness on one side of the body, impaired vision or slurred speech. These symptoms subside normally but in some cases remain permanently. Without treatment, Moyamoya can cause intracerebral hemorrhage and severe permanent disability.
The objective of this project is to fundraise diagnostic and therapeutic techniques for Moyamoya. We conducted it in close collaboration with Assoc. Prof. Dr. med. Nadia Khan (Neurosurgeon-specialist in moyamoya disease) at Children’s University Hospital Zurich.
PICTURE.- (Graphics from SVEN, Children’s Book Project) The best treatment option for Moyamoya is based on surgery. These pictures explain the treatment in an easily understood manner. To restore blood flow to the brain a bypass is needed, which is done using healthy blood vessels. This bypass provides additional blood to the areas of the brain deprived of blood.