Neuronata-R In Korea

[MandellFam]

News came out yesterdays that
Neuronata-R in South Korea showed to help PALS who are slow progressing. My husband is technically a slow progresser (symptoms 2 years now and just in lower limbs) but things we changing pretty quickly. I would consider going to Korea to get him the 5 injections. Is that crazy? Has anyone looked into this or know how we would do this? We live in US (Chicago).

 

[Nikki J]

I know of someone who did this. However it was several years ago and I know no details. I don’t think it helped but I also don’t think they were slowly progressing. They are now sadly passed away. Given that the full trial failed and the Korean approval was conditional do you know if it is even available in Korea?

I think you are basing this on Slow-progressing ALS patients see gains in function, survival with...

Even though it says from a press release I can’t find one publicly released. So this is second hand reporting of a company’s spin. I don’t know how they defined slow progression or the characteristics of the alleged responder group. I would feel better about it if it had been a pre specified subgroup but this is post hoc analysis which is always a little iffy.

As someone with ultraslow progression I would like this to be real but I want more information. I think the fda will probably ask for another trial

 

[lgelb]

It's been kicking around for a while. It got FDA orphan status in 2018.

You'll find more by searching on its generic name, lenzumestrocel, but interviews like this do not fill me with confidence.