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In 2019, while serving as one of the moderators for the ALS News Today Forum, I added more than 355 people to my circle of ALS-friends! And in the short time since the forum’s launch, it has grown into a trusted space where members can ask questions, share suggestions and have in-depth discussions on ALS topics in the news.
What have I learned from our members? I’ve learned that ALS exists almost everywhere in the world — which challenges the notion that there is one profession, activity, or single cause of ALS.
I’ve also learned that although we all have a different journey with ALS, we share the same fears, anxiety, and worries about the disease. We’re all searching for a treatment, a cure, and an answer to the question, “Why me?”
And I’ve been humbled by the disparity of treatment options and medications available from country to country. Many overseas ALS patients do not have access to riluzole or other standard medications. They have to travel great distances for medical care; even then, physicians with experience treating ALS are not commonplace. For these forum members, we offer suggestions, helpful links, empathy, and support.
Read the entire column I wrote here: “Join Our Virtual Friendly Neighborhood, the ALS News Today Forums”
If you know someone who would benefit from being a part of our “virtual, friendly, support group” invite them to join us!
What have you learned from being a member of the ALS Forum?
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