Maybe I can start.
I know this very well. There's a lot of research being done on that in Montreal and in Toronto. There is even a company that has been created. It has been created in the open space. It's called M4K, Meds for Kids, and it's working on development of a potential treatment for this disease.
It's a nice example of a rare, terrible disease where when we started understanding some of the biology, ideas appeared as to how to find treatments for this disease.