ALS News Today Forums Forums Living With ALS “I have ALS … how do I set goals? And do I need them?”

  • Kathleen B (Katie)

    January 12, 2023 at 6:24 pm

    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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