Lessons learned from my ALS awareness experiences

A few months after I learned I had ALS, I was invited to participate in a walkathon to help raise funds for the ALS Association. I’m sure my curt reply of “No, thank you” came as a shock to the person inviting me.

At the time, I had just begun using a rollator to help me walk, and couldn’t imagine myself trekking around the high school track where the event was being held. Never mind the suggestion that I could just show up and cheer from the sidelines. Nope! I could barely pronounce the full name of the disease, let alone be expected to fundraise for it. Little did I know how involved I’d be in raising awareness and funds — and in very creative ways — in the following years.

Let me share a few examples, along with the lessons I learned along the way.

Sharing my ALS story

One afternoon I was surprised by a phone call from my neurologist inviting me to speak at a local ALS fundraising event. The thought of sharing my personal ALS story with total strangers was intimidating. My mind raced as I wondered exactly what my ALS story was. And if I told it, would I break down in a puddle of tears? Nevertheless, I agreed to do it.

At the event’s conclusion, I felt so happy I was there. That evening, I spoke from the heart, and in return, I felt the compassion in the room and the support surrounding me. My husband and I had a great time and joined in the cheers when the announcement came at the end of the evening that the event had reached its monetary goal.

I learned that, yes, it takes gumption to tell your story. It’s hard to talk about a disease you’re living with and the changes it causes to your life. But people are interested. I’ve learned that opportunities to speak up are everywhere, and it doesn’t have to be a formal event. Simple conversations happen all the time.

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Entering a contest

My personal blog, “ALS and Wellness,” was only two years old when May rolled around and it was ALS Awareness Month once again. Still uncertain about how I could participate, I discovered a unique opportunity: I entered a Best Health Blog Contest. If I won the $1,000 prize, I decided I’d donate it to my local ALS Association.

The contest began with over 100 health blogs representing all kinds of health conditions. Every day for two weeks, I sent short, cheery daily messages to my friends with a quick fact about ALS and the link to vote. At the bottom of the email, I suggested they share my daily messages with their friends. To my surprise, they did!

By the last few days of the contest, mine was among the top three blogs. 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!

Not only did it feel good to present a $1,000 donation to the ALS Association, but I had also become comfortable talking and writing about ALS. The experience helped me accept the disease and shift my focus to finding ways to successfully live with it.

When things came to a standstill

Then there was the year 2020, when, due to the pandemic, ALS Awareness Month faced its biggest challenge. In-person events were shelved as everyone sheltered in place. But ALS doesn’t stop, and neither do resourceful event organizers. I felt pride in their creative solutions.

Keynote speakers presented online, and walking teams went online as well to log their points. Businesses donated a portion of their sales to ALS-related organizations. I had fun discovering their unique campaigns, such as Drink One for Dane, Ales for ALS, and Inked for ALS, and encouraging my readers to support them.

Maybe you’re not quite ready to jump into one of the traditional ALS awareness events popping up this month, but we need you. The perfect time to begin is now, and there are lots of easy ways to participate.

Together we can raise awareness. Together we can create a world where we 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.