Need money for research
If is a deadly muscle disease, the cause of which is still unknown. The money from the loop mainly goes to the center (part of the UMC Utrecht), where they are researching the origin and the course of the disease. And that takes a lot of time. “It’s like having to solve a puzzle of 1500 pieces in a dark room,” is the description of the center.
Because if there is a rare disease, unlike, for example, cancer, as a center, it must mainly pay his investigations with donations. With previously collected money, an app has been developed, with which patients can contact their doctor directly. “Then they can ask, for example: I feel stuffy, what should I do?”
According to the center, a medicine study is currently showing hopeful results. “We look close to a second medicine for another rare form of ALS.” About a year at the earliest, the center expects to be able to share results.