Wednesday, May 6, 2015

MAYDAY-MAYDAY! (ALS Awareness Month)

If 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,


The “Mayday call” is a distress signal recognized around the world and used to signal a life-threatening emergency.  Mostly, it’s used by those out at sea or flying up in the air, but I figure the “Mayday call” works 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 voice call to replace the old SOS Morse Code call, they chose the word “Mayday” - - which corresponded to the French pronunciation of the expression m’adiez - - “help me!”

There’s even a “Mayday relay” procedure, where other ships in the vicinity take turns relaying the distress call forward until it finally reaches those who can help. 

I also find the choice of May as ALS Awareness Month 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 5,600 are newly diagnosed each year, the estimated lifespan following diagnosis is only 2-5 years.

Which 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.  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 - - never heard of it before!  Interesting, because this is the 23rd anniversary of ALS Awareness Month; having been inaugurated back in 1992.

Talk about a cause with lack-of-awareness issues!

So 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? Here’s a short list. If you want to learn more about any of the topics, just click on it to go to the link I've provided.

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

Throughout the years I've spent in hospital-based wellness 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:

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 my no-cost ideas:

How about writing “May is ALS Awareness Month” on the back of all your outgoing mail?

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.


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? Well, dear blog reader, you do 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? 

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 Relay” - - together we can offer hope, bring help and make a change!

Dagmar Munn
ALS and Wellness Blogger

Those who are happiest are those who do the most for others.
-- Booker T. Washington

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