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  • ALS Webinar of Note: Updates on Six Unusual ALS Projects

    Posted by Dagmar on September 16, 2019 at 11:57 am

    There is a webinar scheduled for later this month that forum members may find of interest. Especially, those interested in alternative therapies, unique therapies and (like me) – – anything from Dr. Richard Bedlack.

    Dr. Bedlack is a neurologist at Duke University (and Duke ALS Clinic) and is known for pursuing investigations into ALS reversals and the world of alternative therapies for ALS. He oversees the ALS Untangled website.

    In the upcoming webinar, Postcards from the Edge, scheduled for Wednesday, September 25, 2019 at 1:00 – 2:00 PM EDT, Dr. Richard Bedlack will provide new information on six “outside the box” projects he is leading: ALSUntangled, ALS Reversals, ALS-CRLI, and upcoming trials with a spice, a banned substance and a filter. Register here. OR here

    I believe the “spice” mentioned is Tumeric; one that I have a special interest in – – so I have registered for the webinar!

    Are there any other online educational programs that you would recommend for our members?

    Tomasz Boski replied 4 years, 5 months ago 4 Members · 6 Replies
  • 6 Replies
  • Dagmar

    Member
    September 26, 2019 at 12:26 pm

    I listened in on Dr. Bedlack’s webinar, which was very interesting – – and I recommend it.

    A few things I learned: he has collected the files from 48 patients from around the world who were diagnosed with ALS and now, no longer have the symptoms – – ALS reversals, he calls them. Dr. Bedlack will now sift through them for any commonalities. He named off 8 off-label treatments these ALS reversals had used in common.

    He is planning on a clinical trial of one of these: curcurmin (the spice Tumeric).

    Here is the link to the webinar recording: https://vimeo.com/362377184?ref=tw-share

     

  • Diana Belland

    Member
    September 30, 2019 at 9:56 am

    Thank you very much, Dagmar, for posting the link to Dr. Bedlack’s webinar.  I watched it yesterday and found it very interesting.  His discussion of how to use his website, ALSUntangled, is very helpful.   I like the fact that Dr. Bedlack addresses the issues that concern many pALS about ALS trials and studies: narrow criteria which limits participation, excessive length of study time, difficulty of obtaining access to promising treatments.

    I spent a bit of time listening to some of the podcasts which are available on the ALSUntangled website.  These are very useful, too, because Dr. Bedlack discusses the pros and cons of alternative or off-label treatments such as coconut oil and curcumin.

  • Dagmar

    Member
    September 30, 2019 at 12:35 pm

    I’m glad you had the opportunity to watch the webinar Diana. Dr. Bedlack is certainly someone to keep on our radar.

    I’ll be interested to learn what he presents at the upcoming healing conference in Colorado — new information or, a repeat of this webinar. If I spot any information, I’ll post it here 🙂

  • Ardi

    Member
    October 2, 2019 at 5:01 pm

    I have read about Clenbuterol for ALS. Where  can i finde more information about the resultats of clenbuterol? And have any people where tested clenbuterol? And can take this also sod1 patient?

  • Dagmar

    Member
    October 2, 2019 at 5:41 pm

    Rick Jobus wrote a great synopsis of the webinar.

    Ardi — Here is the link he provided on clenbuterol: https://olv.duke.edu/technologies/clenbuterol-therapy-for-amyotrophic-lateral-sclerosis/ as well as this one: https://www.tandfonline.com/doi/abs/10.1080/14660820600600558?journalCode=iafd19

     

  • Tomasz Boski

    Member
    November 1, 2019 at 11:52 am

    In 2017 I followed webinars by R.Bedlack. Flashy presentations about reversals and exotic substances. Nothing came out, just more webinars.

     

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