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    • #22904
      Amanda
      Keymaster

      On the ALS News Today website, there was an article, “Trial Planned Into Digital, Home Monitoring of ALS Progression: EverythingALS-led study of biomarkers in people with or suspected of having ALS.”

      The study focuses on capturing information regarding biomarkers from pALS at home. This could be very useful for research.

      Have you read the article? What are your thoughts? Are you considering participating? Why or Why Not?

    • #22947
      Kathleen B (Katie)
      Participant

      Yea—I read the article—sounded very interesting!  Then I got to the part about ‘qualifying’…and, I have had no ability to climb stairs since June 2021…and my official diagnosis was May 2021 (after a full year of diagnostic work that started June 2020 as ‘left foot drop’).
      so, No… not enrolling—just want to encourage others to do so —every little bit helps more than we might know actually.   I DID learn from the article why my ALSFRS-R score decreased since diagnosis day—my ability to walk keeps decreasing …which leads to other skills difficulty too ( such as dressing & showering & turning over in bed).  So, while I could pass on speaking and eating, & hand/arm use, I’m losing in other areas.  Good luck all!  I’ll be reading for results!

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