From Utrecht to Vienna: Cycling 1300 km for a rare disease
Tuberous sclerosis - also called tuberous sclerosis complex (TSC) - is a rare, multi-system genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. It usually affects the central nervous system and results in a combination of symptoms including seizures, developmental delay, behavioral problems, skin abnormalities, and kidney disease. The disorder affects as many about 1 to 2 million individuals worldwide, with an estimated prevalence of one in 6,000 newborns. The name tuberous sclerosis comes from the characteristic tuber or potato-like nodules in the brain, which calcify with age and become hard or sclerotic. TSC usually causes the greatest problems for those affected and their family members through effects on brain function. Most individuals with TSC suffer from seizures at some point during their life, that can be difficult to control by medication.
Jasper van Schelt is a 23-year-old Master student at Utrecht University. In October he will be traveling to Austria to do research in the lab of Juergen Knoblich at the IMBA in Vienna. His plan is to cycle 1300 kilometers from Utrecht to Vienna to raise money and awareness for the disease tuberous sclerosis. Once reached his destination at IMBA, he will join a team working on TSC who use state-of-the art organoid technologies to study how brain tumors arise in tuberous sclerosis and how we might be able to stop this process. “I have decided not to go by car, train or plane, but to travel the 1300 kilometers by bicycle and a tent. With this endeavor I hope to raise money for the Dutch association for tuberous sclerosis, and in doing so, increase awareness of the disease and ultimately the quality of life for patients”, Jasper says.
You can support his initiative through the website:
Follow his journey on polarsteps where he will be posting pictures from his endeavorpolarsteps.com/JaspervanSchelt