ALS News Today Forums Forums Boosting Our Voices ALS Awareness Month ALS TRIVIA – – “ALS Has Many Names” Did you Know?

  • Dagmar

    May 16, 2023 at 11:56 am

    Thank you for posting this one Amanda! Too many names? This is a topic I feel strongly about. Here are some excerpts from a column I wrote on this very issue:

    “…the disease goes by three names! …every news item, press release, or research article has to state ALS … or MND …, also known as Lou Gehrig’s disease, before diving into the actual topic. Having multiple names and ending with something like, “also known as” is a marketing and fund-raising nightmare.”

    “During my first year of living with ALS, I’ll be the first to admit that just speaking or reading the letters A-L-S made me sad. Their invisible power created images and fears that took my mind to dark thoughts. Knowing I had to feel, read and speak those three letters every day for the rest of my life, I decided to change their meaning completely. I turned them into something new, positive, and more ME. Words that made me smile, like:

    Abundant- Laughing-Situations, or Attitude-Leads to-Success and even Active-Locomotor-Skills

    So, maybe we are too far into life to stop and have the world adopt only one name for this disease; too much corporate letterhead to change, and too many explanations. But whatever you choose to call it — ALS, MND, or Lou Gehrig’s disease — I vote to add the tagline also known as: Adapt-Learn-Survive”

    You can read the full article here.

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