MAYDAY-MAYDAY! (ALS Awareness Month)

If a ship at sea starts to sink, the first order of business is to get attention - - LOTS of attention!

Fire the flare guns! Hoist a white cloth up the flagpole and don’t forget to turn on the ship-to-shore radio and holler:

Mayday!-Mayday!-Mayday! 

The Mayday call is a distress signal recognized around the world signal a life-threatening emergency.  Mostly, it’s used by those at sea or flying in the air, but I figure the Mayday call can work for us land lubbers as well. That’s because back in the late 1920s when the I.R.C. (International Radiotelegraph Convention) was searching for a audible call to replace the old SOS Morse Code call, they chose the word “Mayday” - - which corresponds to the French pronunciation of the expression m’adiez - - help me!

There’s even an official Mayday relay procedure, where other ships in the vicinity take turns relaying the distress call forward, until it finally reaches those who can help. So, I believe designating the month of May as ALS Awareness Month, is a perfect fit; it’s our own Mayday call to the rest of the world.  

An estimated 30,000 Americans are living with ALS; a number that stays eerily constant. Why? Because even though around 5,600 people are newly diagnosed each year, with the estimated lifespan following diagnosis of only 2-5 years, around 5,600 die from the disease.

This means our little ‘ALS boats’ are sinking faster than help can show up to save us!

Yes, ALS holds the bottom rung of a very tall totem pole stacked with diseases, conditions, and environmental woes all equally deserving money for research and programs. But did you know that according to the ALS Association, prior to the summer of 2014’s Ice Bucket Challenge, only 50% of Americans were even aware of ALS? Heck, I didn’t even know what ALS was when I received my diagnosis in 2010 - - never heard of ALS before!  

Very interesting ... because, ALS Awareness Month was inaugurated back in 1992.

Talk about a cause with lack of awareness issues!

So, going forward (with fingers crossed) for the remainder of May, I’m not asking you to dump a bucket of water over your head (although I won’t stop you if you really want to!), I’m asking you to simply help raise awareness.

What are the current issues and initiatives? 

Sadly, it's about the same list, year after year. (drum roll please...)

1. Limited medications and treatments.
2. The slow pace of research due to low funding.
3. Access to clinical trials.

Not to mention, we still have no prevention or cure for ALS!

During my professional years leading a hospital-based wellness program, we relied on a simple 3-step method to get the word out about our health initiatives. Based on that strategy, I have a few suggestions for you to help raise awareness of ALS: have visibility, create personal connections, and start a conversation.

#1. Have Visibility:

Even though all the t-shirts, colored socks, wrist bands, key chains, decals, and tote bags generated in the name of fundraising and “awareness” eat up a good chunk of every dollar donated - - they do work. They work because, they make an issue visible. Here are a few of my no-cost ideas:

-> Wear a temporary tattoo. I’ve been doing it for the past few years – – it’s fun, easy to do, and it's visible.

Here’s the scoop: During past ALS Awareness Month, Amylyx Pharmaceuticals had a campaign where they sent out free temporary tattoos. Unfortunatly, last year due to less then expected results, they had to pull their ALS trial drug from the market. Thus, no more free tatoos. But you can order a version from Amazon. Not the same, not free, but they do work.

-> Consider changing your social media profile photo for the month of May. I’ve created the one on the left, the red one on the right is from the ALS Association. Both are free to copy, paste and use. (Facebook also has a number of "profile frames" as well) 

 

      

                            

#2. Create Personal Connections:

Do you know anyone with ALS? A spouse, sibling, friend…or friend-of-a-friend? Do you know their story? How ALS changed their life - - and the lives of their immediate family, extended family, and circle of friends?  Reach out and talk to them.

Don’t know anyone personally? If not, well, dear blog reader, you know me; which makes us “friends!” Here’s my story About Me and for fun, I’ll even share a quick look at how I used to move - - before I had ALS.

Having trouble viewing the video here? 

Use this link to watch on YouTube

#3. Start a conversation:

-> As in: "Did you know May is ALS Awareness Month?" 

Or, 

"My friend Dagmar has ALS, and let me tell you what she’s doing…”

Or, share this blog with others!

-> On Facebook, “Like” your particular state’s ALS page to receive their daily posts, then share on your own page.

Opportunities are everywhere.  

Simple conversations happen all the time. According to Sasha Dichter, CEO of the nonprofit organization Acumen Fund, “Maybe you didn’t convince them today, but you probably got their attention. Maybe they’ll tell a friend and maybe that friend will want to learn more. “

Join the “ALS Mayday call” - - together we can offer hope, bring help, and make a change!

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Dagmar Munn
ALS and Wellness Blogger

Those who are happiest are those who do the most for others.

-- Booker T. Washington

 A version of this article was published on ALS News Today