ALS News Today Forums Forums Boosting Our Voices Awareness and Advocacy More Treatments vs. Improved Quality of Life?

  • Dagmar

    March 11, 2024 at 12:19 pm

    As a pALS who’s lived with ALS for 14 years – – I vote “more & better treatments and even (gasp!) a cure.

    We have enough walkers, rollators, power chairs, respiratory devices, feeding tubes, and eye gaze devices. How about something that eliminates the need for these entirely? While I’m on my soapbox 😉 I haven’t seen any improvements in feeding tubes, eye-gaze devices, or BPAPs. Still the same as 10 yrs. ago. So, let’s focus on the cause of ALS and the cure.

  • Amanda

    March 11, 2024 at 12:55 pm


    Finding better medications & treatments for ALS is the priority to me!! ALS was identified in 1869 by French neurologist Jean-Martin Charcot. In 1939 the disease gained recognition when t ended the career of one of baseball’s most beloved players, Lou Gehrig. So, in 154 years very little progress has been made, at least until recently. And the latest breakthroughs only help a small number of people in the ALS population.

    I’m on tofersen, a treatment for SOD1 ALS. I’m one of the lucky 300+ people in the US that can benefit from this treatment. It shouldn’t be this way! There should be more treatments (not just meds that extend life by months) that make a real difference for more pALS. We need the research to target cures and effective life extending (quality life) treatments. Research is where I strongly believe the money should go.

    I’ll get off my soap box now 🙂


Log in to reply.