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    • #15147
      Nicol
      Participant

      Has anyone heard of this treatment for ALS?  Currently, in Phase 3 trials with FDA.  Some efforts are lobbying for it to be categorized as a treatment for a terminal illness with the right to try for ALS patients.  Here’s a summary in this video:

       

    • #15151
      Dagmar Munn
      Keymaster

      Nicole – – we’ve had some previous discussions about Nurown  that you might find helpful. Here is the link to:

      “The Controversy About Nurown” https://alsnewstoday.com/forums/forums/topic/the-controversy-surrounding-nurown-a-roundtable-discussion/

       

      • This reply was modified 2 years, 1 month ago by Dagmar Munn.
    • #15154
      DanD
      Participant
    • #15157
      Nicol
      Participant

      Thanks Dagmar!  I went back and read that thread.  I appreciate your help!

    • #15158
      Nicol
      Participant

      Thanks Dagmar!  I went back and read that thread.  I appreciate your help!

    • #15167
      Nicol
      Participant

      One more video with more information and specifics….

      Thoughts?

       

    • #15174
      Dagmar Munn
      Keymaster

      Nicol – – Amanda does a good job of presenting an impassioned plea for NurOwn to become available for Right to Try patient use. However, I am still on the fence with the whole issue. Double-blind placebo studies are done for very good reasons. Nicol, what are your thoughts?

      For any members wishing to catch up on this topic, here are the questions first posted in the original topic thread. (the link to the thread and multiple replies is available above).

      Nurown, the promising stem cell treatment for ALS, is currently in a Phase 3 clinical trial, with results expected to be announced December, 2020. But, controversy between the company and ALS patients is dominating social media. For example: some patients are demanding early access, others are petitioning lawmakers and final results of this expensive treatment have yet to be confirmed on a large cohort.

      Here are a few of the key points, with discussion questions for our forum members:

      • The company’s Phase 1 and 2 trials had positive results with 2-3 participants sharing on social media how they experienced a reduction in symptoms. (Here is a news report on Mark Bedwell’s remarkable resultsQuestion: Why don’t other trial participants come forward to share their experiences?
      • This led to other ALS patients demanding early access to the treatment under the new Right to Try law. But the company is resisting this early access, stating they want to wait until Phase 3 is finished, in order to preserve the integrity of their testing. (Here is a link to the company’s positionQuestion: Do you think they are correct in waiting? Should lawmakers force companies to provide ALS patients access to treatments not yet approved by the FDA?
      • Currently, the NurOwn stem cell treatment is estimated to cost $300,000/patient. But it has not yet been established if the effects will eventually wear off, requiring repeat treatments. In addition, the company claims that stem cell treatment is neuroprotective; for existing motor neurons, but it has not yet been proven that it will also create new motor neurons to replace those that have already died off. Question: Should this hefty cost be covered by health insurers? Especially since NurOwn only slows down symptoms, and is not a cure for ALS?

      What are your thoughts about NurOwn as a treatment for ALS? Has this conversation topic sparked additional questions for you? Would you try NurOwn; and what about its cost?

    • #15177
      Nicol
      Participant

      I’m guessing one’s willingness to participate in RTT could correlate with the their own experience of the  progression of the disease.  Speaking for myself, I would like to try something that has shown help for ANY pALS, especially one that has already passed Phase I and Phase II testing, because I’m two years out from my first subtle symptom and already I cannot walk, talk or swallow.  I’m relatively young 55yo, 2 kids still in college, and 2 others just starting young families.  My first grandboy is just 2yo and I’d like to meet the many others that may come, as well as see my only daughter get married.  I’m not afraid to die, Jesus is my Savior, so I know where I’ll be….but the way ALS takes you, I’m definitely NOT anticipating.  So yes, there are reasons to be cautious, but personally, I believe there may be more reasons to advocate for RTT.

    • #15179
      Dagmar Munn
      Keymaster

      I fully support the Right to Try initiative – – for any ALS emerging treatments.

      But I am cautious about the outcomes of NurOwn vs. the risks and effort of having it done. Spinal taps to extract stem cells, waiting months for stem cells to grow, spinal injection of stem cells – – then repeat the whole process every 6 months. And at a huge $$$ cost.

      Not all who received NurOwn have had similar results. I’ve kept in touch with a pALS friend who participated all last year (Boston location) and… nothing happened. He continues to decline.

      Nicole, I am so sorry you have progressed to losing the abilities you listed…. but there are other emerging treatments and studies out there that you could maybe participate in now. Sending you good wishes. (Are you taking Riluzole?)

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