[pawel-rawicki]

Thanks a lot for all your input!
One thing to clarify: there is no chance we stop spinraza unless we decide to switch to Zolgensma and at some point in the future (years in the future) a neurologist will be certain that Alex can stop taking Spinraza. We’re thinking about Zolgensma but maybe the word “switching” was bad choice. It is more about adding Zolgensma.

There is very little data but to be honest, some of the great stories of children taking spinraza for several years are not really encouraging…

Our main concern is breathing and swallowing and we know from parents of children on Spinraza (in Europe) that for many of them it is still a problem even after great progress of motor functions. I am aware that real progress comes after 6 doses but I have to decide about Zolgensma earlier than that.

So, currently we are in the process of making translation of medical documents of Alex. It is great idea to reach out to cureSMA and I think that will be our next move.

Btw, feel free to join Alex’s support group here (always includes English):
https://www.facebook.com/groups/westandwithalex/