But we have stayed on top of any good news on it via a Facebook group, Google alerts, and working a lot with her doctors. We’ve also given stem cells (crazy expensive) a chance.

I know we’re talking about totally different conditions, but the same course of action could help. Find a Facebook group and read all they post (with some skepticism), follow Google alerts and read all the white papers coming out, and find great doctors and work with them.

Best of luck!