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  • Reputable ALS websites and sources of information

    Posted by Amanda on May 6, 2019 at 6:43 pm

    Finding updated an relevant information about ALS isn’t an easy task. I typically turn to ALS News Today and the ALS Association websites because I know that they are trustworthy. There are a lot of scams out there including how to eat to cure ALS. Many of the research articles require a fee to access and other articles are outdated with misinformation. Where do you turn to find relevant and timely information about ALS and related topics?

    Dagmar replied 5 years, 1 month ago 2 Members · 1 Reply
  • 1 Reply
  • Dagmar

    May 7, 2019 at 12:17 pm

    A great and highly reputable website that focuses on scams, alternative and off-label “cures” for ALS is: ALSuntangled. 

    Click on “completed reviews” to see a rating of popular therapies.

    Click on “open reviews” to see the scary world of scams, shams and hope-in-a-bottle methods that are advertised in the ALS community.

    ALSUntangled is a social media based tool lead by clinicians and scientists designed to provide unbiased and comprehensive reviews of such treatments and thus allow patients to make more informed decisions about them. ALSUntangled was founded by Dr. Richard Bedlack, Director of the Duke ALS clinic in Durham, NC, and is currently sponsored by The Motor Neurone Disease Association and The ALS Association. Reviews are published as open-access articles in the journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration and are also available  on the ALSUntangled website.”

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