-
FUS Ionis trial
Hi all, I see a lot of discussions about Toferson, with (I feel) good results. Since 2022 it is possible to join the Ionis trial specific for fALS with FUS. This idea of medication is what I understand the same with ASO. I am at this moment the 3th person in my family who is going to enter the trial. Are there more people in this forum who joined the trial and can you say something about the progression? Do you stabilize and do have side effects?
Greetings angelique
-
4 Replies
-
Hi Angelique,
Tofersen, now called QALody is for people with a SOD1 mutation. It was conditionally approved April 24, 2023 by the FDA in the US. There are definitely more than “feel good” results. There are documented datum that show that pALS have a reduction in NFLC. Qalsody works by <b style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>reducing the amount of a toxic protein (SOD1 protein) that causes damage to motor neurons and the symptoms of ALS . I have been receiving QALSody since July 2023. My emgs, muscle strength tests, and blood work (that is how the show NFLC reduction) all show differences. I am stronger, and am not declining. I have heard of others with rapid progression ALS seeing a slowing of the disease.
Amanda
-
Dear Amanda, could it be, that in the first post, he spoke about https://clinicaltrials.gov/study/NCT04768972? Have a great day and best regards from Switzerland, Peter
-
Could be, and I’m sure they will let us know. I guess it is a good thing that there are numerous clinical trials even if it confusing 🙂
-
-
-
<font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”>Yes I was hoping to find people who joined the FUS trial of Ionis. The idea of this trial (to bring down the toxic production of FUS) is the same as SOD1 so more then great to hear that you are feeling so good by this medicine! </font></font>
Log in to reply.