Online forums help ALS community members make connections
Members come from across the US, South America, Europe, and Asia
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I spent five days last week corresponding with a fellow ALS patient in the U.K. We met during a unique online event that reminded me that, while this disease can feel isolating, the ALS community wraps all the way around the globe.
Beyond the connection, I walked away with several valuable insights about how to be a better facilitator for our community.
The “Ask Me Anything” (AMA) event was hosted on the ALS News Today Forums. Our featured guest was James Smith (@adaptwithjames on Instagram), a husband and father of three, who has been living with ALS since 2022. James tackled a variety of questions from forum members, sharing the realities of his journey with honesty and heart.
As a forum moderator, I was on hand to keep the conversation flowing. Since this was a new format for our members, the first day was admittedly sparse. However, as more people trickled in, the momentum shifted. What began as a formal Q&A morphed into something more akin to a casual chat over virtual coffee and donuts. James answered every question that came his way, offering practical tips and motivating advice.
By the end of the week, I didn’t just know our members better: I had a front-row seat to what makes online social interactions succeed.
Many options
There are many ALS-focused social media sites for patients and caregivers. While some have dedicated moderators who maintain a friendly atmosphere, others feel like the Wild West. That is why I value the ALS News Today Forums. There are no spammers, ads, or arguments. My co-moderator, Amanda, and I work hard to encourage meaningful interactions and respect while keeping the environment safe.
I’ve learned that jumping straight into heavy or overly personal topics often intimidates people. No one wants to be the first to speak among strangers. As moderators, we have to build genuine connections first. The key is to offer questions that provide a sense of normalcy without ignoring the reality of our shared condition.
Some of my favorite icebreakers include:
- “What is a piece of advice you’ve received that has actually been helpful?”
- “What is one small accomplishment you had this week that you’re proud of?”
To keep the community healthy, I also suggest a few guidelines for our members: Avoid dominating discussions with long, exhaustive versions of your diagnosis journey, and refrain from listing symptoms to request a medical diagnosis.
Expanding the circle
Our members hail from across the U.S., South America, Europe, and Asia. I imagine new members often wonder what they could possibly have in common with everyone, and what they might contribute?
“A lot,” I tell them. From book recommendations to tips for traveling with ALS, every contribution helps forge friendships and empathy. We are all navigating the same challenges. I invite you to join us for our next AMA. Or better yet, join the forum today and discover how you can live well while living 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.
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