ALS News Today Forums Forums ALS Progress Research Topics FUS Ionis trial Reply To: FUS Ionis trial

  • Amanda

    Member
    February 14, 2024 at 8:00 am

    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