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    • #14020
      Dagmar Munn

      NurOwn, stem cell therapy, Reldesmtiv, cannabis and Ibudilast are just a few of the treatments that have made waves in the ALS community in the last year. In addition, Dr. Richard Bedlack has identified and verified (now up to) 45 ALS reversals; persons who had ALS for several or more years and… don’t have it anymore!

      Which of these news events spark the most interest and hope for you and why?

    • #14036

      They all excite me! We just need to push forward aggressively to rapidly test and approve the stuff that helps. I am frankly frightened that some will prove to be prohibitively expensive.

    • #14039
      Dagmar Munn

      I agree Bill. Next year may hold many promising treatments for ALS.

    • #14034

      In my opinion, for now Nurown worth the pain inherent to its administration and it should be administrated every few months. Arimoclomol is probably something more easier to prescribe to patients (and hopefully less costly) as it does not mandate a special medical procedure and has a clear and understandable mechanism.

      Apart from that there are Canadian and Japanese groups that are designing therapies. These are the things that at the moment are closest to a cure but they are not yet ready for clinical trials.

      To paraphrase Feynman  I would stay away from people making extraordinary claims without extraordinary evidence.

    • #14043
      Diana Belland

      A press release dated December 17, 2019, has good news about AMX0035:  “Amylyx Pharmaceuticals Announces AMX0035 Demonstrated Statistically Significant Treatment Benefit for People with ALS in the CENTAUR Trial.”
      <h1 class=”epi-fontLg bwalignc”></h1>

    • #14426
      Dagmar Munn

      I am posting this question for Pat Knight, one of our forum members:

      “Hi Dagmar my Dr gave me a prescription for the AMX0035 trying to get the sodium phenylbutyrate is the problem my wife is going around with the insurance company so far we have found it for around 1000.00 per month.

      Has anybody else been trying this?”

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