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  • Where do you get you news about ALS

    Posted by Amanda on February 20, 2020 at 7:34 am

    When I’m curious about something regarding ALS I usually search ALS News Today, The ALS Association  or ask the ALS research team in Miami.  I find there is a lot of information out there, and some of it is conflicting. Where do you go to learn more about ALS. Do you tend to use ALS News Today more? What other resources have you found to be factual, relevant and up to date? What kind of information is the most important to you? Are you interested in clinical trials? Advocacy? ALS Clinics? Please share your thoughts and concerns regarding News about ALS.

    Dagmar replied 4 years ago 3 Members · 2 Replies
  • 2 Replies
  • kerry-winkler

    Member
    February 20, 2020 at 3:22 pm

    I have accumulated various sources over time. ALS News Today continues to be an important source, but I have also found it very beneficial to belong to Facebook groups dedicated to ALS, and I follow a number of groups/people on Twitter. With that information base, I’ve identified specific sources I  regularly check – ALS Canada, IAMALS, Brainstorm Cell Therapeutics, etc.

  • Dagmar

    Member
    February 21, 2020 at 12:08 pm

    I too, rely on ALS News Today for daily articles. But to keep “an ear to the ground” for trends or emerging topics, I also scan a number of ALS-focused Facebook groups.

    I receive email updates from ALS Association and NEALS Consortium. And try to avoid signing up for alerts from groups who bombard me with donation requests. Sadly, IAMALS is one of those.

    Interestingly, I don’t find many pALS on Twitter (only organizations) and Instagram is not useful either for “gathering information” – – people may be posting their latest thoughts or vacation photos…but very little news, or it’s recycled news.

    I also check other disease news sites and blogs – – MS, SMA, Parkinson’s, etc. – – much of what happens in these arenas applies to ALS.

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