How I Took My First Step in Spreading ALS Awareness

Like many newly diagnosed ALS patients, I was overwhelmed by the steep learning curve of finding out more about the disease. Never mind having to jump in and help raise funds for it. Every time May rolled around with ALS Awareness Month, I was uncertain about how I fit in and what I could do.

I finally found a way, and it was a win-win situation: It would help me accept my disease, and grow more comfortable talking and writing about it, and I could make a sizable donation. I entered a Best Health Blog Contest.

A whirlwind 2 weeks

The contest was sponsored by Healthline.com, an online group that posts articles and newsletters about a variety of wellness topics. They offered a $1,000 cash prize to the health blog that received the most votes in a two-week period. If I won, I decided I’d donate the money to my local ALS Association.

Taking a deep breath, I emailed a small group of friends and asked if they’d like to join my “team” and help me. To my relief, everyone responded with a resounding, “Yes!”

Since my friends would have to vote every day for two whole weeks, my challenge became keeping everyone motivated and not wearing out my welcome. I settled on sending short, cheery daily messages that contained a quick fact about ALS and the voting link. At the bottom of the email, I suggested they share my daily messages with their friends. To my surprise, they did!

The day the contest began, over 100 health blogs representing all kinds of health conditions were in the running. By the time the last few days rolled around, mine was among the top three. It was a close race, but with a last push of votes from ALS patients, friends, and friends of friends, my ALS and Wellness Blog won!

During my next ALS clinic visit, it was so much fun to present a $1,000 donation to the ALS Association care coordinator and send a thank-you photo to all who helped with their votes.

Looking back, I can see that having to write two weeks’ worth of witty messages about ALS and asking friends to participate certainly helped me erase any angst when talking about ALS.

Columnist Dagmar Munn, center, donates contest winnings to the ALS Association in 2017. (Courtesy of Dagmar Munn)

Ideas to ease your way into ALS advocacy

Maybe you’re not quite ready to jump into one of the traditional in-person ALS awareness events popping up this month. So, here are a few unique awareness-raising activities that I’m sure will help you step in:

How about a good cup of coffee? On May 14, Dutch Bros Coffee will host a fundraiser called “Drink One for Dane.” A portion of that day’s sales will be donated to the Muscular Dystrophy Association to help find a cause and cure for ALS. This year, they hope to raise $1.6 million!

Or, how about a temporary tattoo? “Inked for ALS” is an awareness campaign sponsored by Amylyx Pharmaceuticals, the company developing the potential ALS treatment AMX0035. Just order their free press-on tattoo from their website, then post a photo of your tattoo on social media. Besides the free tattoo, they also have free ALS awareness Zoom backgrounds and a Facebook frame.

For more awareness events, take a look at these lists on the websites of the ALS Association and the MDA Association.

We’re in it together

Fundraising is clearly important for finding a cure for ALS. However, raising awareness is the first step. Let’s continue to work together, raise awareness, and close the gap in the progress of finding a cure.

We want to live well without having to live with ALS.

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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.