How to keep ALS Awareness Month going all year long

Fighting for a cure doesn't have to be limited to just 31 days

Juliet Taylor avatar

by Juliet Taylor |

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As ALS Awareness Month comes to a close, it’s a good time to reflect on what we’ve accomplished, and perhaps more importantly, to find ways to both sustain and build upon our momentum as we search and fight for cures.

For the past month, members of the ALS community have been sharing ALS facts and videos on social media, attending local and national events, and connecting with one another, all in the name of shedding light on the devastating impact of this disease and the ways that we can collectively fight it.

Those of us in the ALS community appreciate May, because we’ll take any dedicated awareness we can get. ALS is a misunderstood, underfunded, and currently 100% fatal disease. Like many people, I barely knew about it until my late husband, Jeff, was diagnosed in late 2018. He died in May 2020. But those of us who have lived with ALS in our families know that every day of the year is about ALS awareness.

Working to raise ALS awareness can feel daunting, or at least it did to me when I entered this community as a result of Jeff’s diagnosis. My feeling was that so many people better understood the workings of legislation, clinical trials, and fundraising than I did, and I wasn’t sure if I had anything to offer. Plus, full-time caregiving left me little, if any, time to take on activities beyond the present moment.

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We all have a role to play

What I’ve learned since then is that all of us can play a role in raising awareness about this disease, and it doesn’t have to be rigorous or time-consuming. I see the ALS landscape and the people in it as a diverse patchwork quilt: Each of us can contribute a piece, or a piece of a piece, to an effective and ever-expanding end result. Every piece is equally important and vital to the overall picture.

While understanding the legislative process or clinical trials or fundraising can certainly be helpful for some aspects of fighting ALS, there are many other creative ways to help end ALS that require small gestures but leave a big impact.

One of my favorite ways to spread awareness is through my license plate. I’ve never had a vanity plate before, but when it came time to renew my car’s registration, I was shocked to find that the words “END ALS” were available in Maryland. So I grabbed it. Sometimes people honk, wave, or point at my license plate. It made me wonder how many states still have “END ALS,” “CURE ALS,” or another variation available. Vanity plates cost a little more, but to me it’s like a traveling billboard. I hope it causes people to become curious, and then educated, about ALS. Car decals serve the same purpose.

I also like to wear my ALS gear when traveling, whether it’s my Hop on a Cure hat and scarf, my I AM ALS ball cap, or my Live Like Lou T-shirt, all of which are available on those organizations’ websites. Many other wonderful and worthy organizations offer swag as well. I enjoy wearing my ALS attire when I post pictures from travels, at national landmarks, or just at the beach. Often, a stranger will approach and share a story of a loved one living with, or lost to, ALS, and sometimes those conversations have led to new connections. At the very least, we can share a moment of understanding and empathy.

I’ve also found that it’s easy to share on Facebook, LinkedIn, or Instagram a social media post about ALS that speaks to me. On days when I feel discouraged or don’t have the energy to write something original, I can simply share content from another site that inspires or informs. There are some prolific content creators in the ALS space: Mandi Bailey, Lorri Carey, Brooke Eby, and Juan Reyes are four that come to mind, but there are literally hundreds more who share meaningful public content every day.

Finally, and perhaps most importantly, I’ve learned that ALS awareness doesn’t have to be big, dramatic, or done every day to be effective. Some of the most significant ways to make a difference happen one-on-one, at dinner table conversations or via supportive text messages, or when simply taking a private moment to reflect and recharge for this continued fight.

When we find the cures for ALS, it won’t have been done in a silo. It will take all of us engaging in this fight, in whatever capacity or with whatever energy we have at the time. No one’s role is smaller or larger. We’re a community, and we will celebrate our successes together, just as we currently mourn our losses together. Let’s keep ALS awareness going past May — all year — until we’re victorious against this disease.

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.


Lisa Whittaker avatar

Lisa Whittaker

I feel like I am in a slump when it comes to advocacy for ALS. I lost my beloved husband Bob January 5,2024, to Bulbar ALS 16 months after diagnosis. I was his caregiver, and I am trying to grieve and also, do advocacy work, plus work my full-time job and take care of our property in Tennessee. I am not complaining, I am so blessed to have had Bob in my life for 41 years. My head and heart want to do so much to bring awareness and find a cure for this dreadful disease. I wanted to go to the I AM ALS summit in Washington DC this week but just couldn't. I hope communicating with others will help.


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