Ibudalist

Berdyna

New member
Joined
Jan 5, 2020
Messages
4
Reason
Loved one DX
Diagnosis
01/2018
Country
EU
State
BC
City
Pristina
Can any one tell me.please if ibudalist works for ALS SOD1. My brother has ALS in is.proved that he has SOD1..please let me know
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,137
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
It isn’t clear yet how effective it is for any ALS. Sod1 has the best hope with the antisense trial. Where is he located?
 

Berdyna

New member
Joined
Jan 5, 2020
Messages
4
Reason
Loved one DX
Diagnosis
01/2018
Country
EU
State
BC
City
Pristina
He is living in Germany. There is an ongoing phase 3trial for tofesen here in Germany but doctors told.him he did not qualify since his disease is progressing slow according to doctors and they are accepting only the agressive form, eventhough his legs are almost completly paralized. He cannot walk. His breathing today was 52. Neuoro told was that Toferesn is expected sometime in the end of 2021. And we are afraid tha it will be too.late for him thats why we are looking for something to at least slow down his progression until antisense is approved.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,137
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
i am sorry. I get it. My progression is too slow for the c9 version.
 
Top