A mayday call to raise awareness of ALS, this month and beyond

Fire the flare guns, turn on the ship-to-shore radio, and holler “Mayday! Mayday! Mayday!” That’s the first order of business for a ship that’s sinking. It needs attention — lots of attention. There’s even an official mayday relay procedure, which lets ships in the vicinity take turns relaying the distress call forward until it finally reaches those who can help.

I thus believe designating May as ALS Awareness Month is a perfect fit; it’s our own mayday call to the rest of the world.

Wait. What? Do we still need to raise awareness about ALS, which I have, as well as funds for research? Hasn’t anything improved since the 2014 Ice Bucket Challenge? It’s a question many ask, especially those within the ALS community. Despite the gradual progress in research, we can all agree that we need more public awareness.

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A way to communicate the need

Back in the 1920s, when the International Radiotelegraph Convention sought a distinct audible call to replace SOS in Morse code, they chose the word “mayday,” which corresponds to the French pronunciation of the expression m’aidez, meaning “help me!” This distress call captures the urgent need for assistance in the face of a disastrous situation.

An estimated 30,000 Americans are living with ALS, a number that remains eerily constant. It’s peculiar because, while as many as 6,000 Americans are newly diagnosed each year and their typical lifespan following diagnosis is only two to five years, around 5,000 Americans die from the disease annually, underscoring the critical need for more effective treatments and, ultimately, a cure. In other words, our “ALS boats” are sinking faster than help can arrive.

So how can we amplify our mayday call and ensure it’s heard? During my professional years leading a hospital-based wellness program, we relied on a simple three-step method to promote our health initiatives:

Have visibility: While some may feel that awareness merchandise such as T-shirts, colored socks, wristbands, and keychains consume a chunk of donated funds, they do serve a purpose. They make the issue visible, and that’s crucial. These items spark conversations, prompt questions, and keep ALS in the public eye.

Create personal connections: Do you know someone with ALS — a family member, friend, or acquaintance? Do you know their story? Understanding how ALS changes lives — not only for the individual, but also for their loved ones — creates empathy and motivates action in a powerful way. Reach out, listen, and share these stories.

Tell us your ALS story: For those directly affected by ALS, sharing your personal experience can make an incredible impact. When telling your story, consider focusing on these questions:

• How has ALS affected your life?
• How has the ALS community helped you?
• What’s something you wish more people understood about life with ALS?

I know it can be difficult to speak about a disease, especially one as overwhelming as ALS. It takes gumption to tell your story. But we need you.

Join me in the “ALS Mayday Relay.” Help spread awareness and send our distress call forward. Together we can strengthen our voices, demand greater attention, and create a world where people can live well without having to live with ALS.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.