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    • #13486
      Amanda
      Keymaster

      Every time I read an article about a possible new treatment I get excited. I know that typically a drug treatment in a clinical trails is often a ways out from being readily available for most pALS. Many times the drug is tailored to someone who was recently diagnoses or diagnosed within a short time frame so it can be a big let down by the time you finish the article. There is a new treatment in the trial phase as discussed in the article https://alsnewstoday.com/2019/10/14/phase-3-nurown-trial-fully-enrolls-200-als-patients-brainstorm-says/  Is anyone involved in this clinical trial? Did anyone look into participating? What do you thing about treatments like this one?

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    • #13487
      Dagmar Munn
      Keymaster

      This is good news!

      When I was diagnosed in 2010, there were very few clinical trials; and those were just the beginning stages of what we see now. Hopefully, discoveries will move along fast enough to become viable treatments for those of us – – now.

      • #13574
        Dave Williams
        Participant

        yes i requested to be included in the trial but did not meet the criteria. I was too old. If you want more information about m- stem cells this work was pioneered by a doctor currently in Panama and I think it’s the most promising stem cell research today.

        The results of the study are to be available sometime in 2020 and I for one, is very hopeful about the outcome.

    • #13497
      Diana Belland
      Participant

      After first reading about NurOwn a few months ago, I looked into the possibility of participating in a clinical trial.  But the studies exclude pALS over the age of 60, so I wasn’t eligible.

      I wonder, once NurOwn receives FDA approval and becomes available for wide use, if it will be approved for pALS over age sixty.    Does limiting the studies to those 60 and under mean that the administration of the drug (by intrathecal injections into the spinal canal) may not be safe for older populations?

    • #13501
      Dagmar Munn
      Keymaster

      You have asked good question Diana. I haven’t read anywhere where 60+ is a risk in this type of procedure. And it is sad if the age cut-off is arbitrary, since ALS most often appears in the 60+ population.

    • #13512
      John Russell
      Participant

      I usually get rejected based on being diagnosed more than 18 mos. I was accepted for Cytokenetics Reldesemtiv. I received the active. No one in the study had adverse side effects. Results were indicative of delay of progression but the statistics were not conclusive. I would love to have this drug since there is possible benefit & no risk but I guess it won’t be available.

    • #13522
      Russell Cowger
      Participant

      I will have my second visit for qualification of the trial on the 24th of October. I am honored to be invited to try. The fact that I could get a placebo kinda sucks but glad I get the chance to try.

      On different note:

      I am really curious about the fecal transplant trial that I seen was going to be happening soon.

    • #13525
      Dagmar Munn
      Keymaster

      Russell – – do you have a link to this fecal transplant trial?

    • #13534
      Russell Cowger
      Participant

      Not sure why my post is awaiting moderation

    • #13537
      Dagmar Munn
      Keymaster

      Hi Russell – – your post was held up because it was a link to a Twitter post… often different social media platforms (Twitter, Youtube, Facebook, etc.) don’t “play well together” so, your post ended up being a lot of computer symbols and thus, unreadable.

      Perhaps you can click on the actual Twitter post you have to be linked to a website? An actual website link will allow others to see your post, if you choose to post it again. Apologies… but that is the wonderful world of technology!

    • #13538
      John Russell
      Participant

      Got your note, Amanda. I am scheduled to see Dr Rup Tandem, UVM reseacher who conducted the trial of Relmasemitiv in which I was enrolled. Will certainly report what he has to say.

    • #13541
      Russell Cowger
      Participant

      Dagmar Check out Katharine Nicholson on twitter. She speaks of it.

    • #13604
      Chuck Kroeger
      Participant

      I was diagnosed 6 months ago but symptoms started about a year ago.  I check pretty much every clinical trial and do not qualify due to decreased lung capacity of less than 60% and age – I’m 68.  At this point I would cherish the opportunity to try NurOwn.  I was on Riluzole for a week but the nausea, headaches and fatigue/dizziness were not worth trying to extend my life by possibly 3 months.  Praying for a cure.

    • #13607
      Dagmar Munn
      Keymaster

      Hi Chuck — aren’t those criteria for clinical trials frustrating? They are for me. Don’t feel old… I’m 68 too! 🙂 It seems like trials only want young, healthy ALS patients — lol!

      In regards to lung capacity, perhaps my breathing routine will be of help to you: https://alsnewstoday.com/2018/05/29/als-breathe-well-balloons-bubbles/

      Feel free to ask questions in these forums; we are a friendly, supportive group! 🙂

    • #13623
      Rudy Palenik
      Participant

      First of all NurOwn is not a drug. It’s a stem cell procedure. Stems cells are pulled from your bone marrow frozen and the stem cells are selected as to create the most effective NTFs and then-multiplied and then injected into your spinal fluid. Second the age requirement of Brainstorm phase NurOwn was created to get the best results out of the clinical trial as well as fast progressors.

    • #13632
      Dagmar Munn
      Keymaster

      You are correct Rudy — thank you for clarifying. In addition, stem cells become neural cells only — they haven’t yet figured out how to create motor neurons  which is what we really need (to somehow replace the ones we’ve lost already).

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