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    • #23304
      Dagmar Munn

        The new year is just beginning, and already my email inbox is overflowing with suggestions about the importance of setting goals and resolutions. But for those of us living with ALS, traditional goals and resolutions for self-improvement often feel empty and frankly, useless.

        In truth, most of us are just glad to have made it this far and really have the goal – – to survive another year!

        Here are a few short articles on thoughtful goal setting for people living with chronic disease:

        “What disabled people know about making better New Year’s resolutions”

        “The Power of One Resolution”

        What’s your opinion about setting goals for 2023? Do you even set goals? If you do, we’d love to read what they are … and cheer you on!

      • #23364
        Kathleen B (Katie)

          Here’s a good goal—all of us need to work on getting our State representatives and senators to understand that EACH State needs to have an ALS REGISTRY mandatory.
          Only 1 state currently has an operational registry, 3 others have a start but not an actual mandate that requires doctors, clinics, etc. to report cases.  This would help then at the NATIONAL level to get a better ‘count’ as registry would be more operational.  BEST OUTCOME: noted change in prevalence numbers—leading to greater awareness that this can happen to ANYONE, anytime—and thus more urgency for early diagnosis, treatments, etc.  Far too long, ALS has been in the shadows as a rare & incurable deadly diagnosis. We need to change that perception this year!

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