Last year, while serving as a moderator for the ALS News Today Forums, I added more than 355 people to my circle of ALS friends. And in the short time since the launch of the forums, it has become a trusted space where members can ask questions, share suggestions, and have in-depth discussions on ALS news topics.
What is the ALS News Today Forums?
It is part of ALS News Today, accessible to anyone from any country and is open to all who are connected by ALS. Our members are ALS patients, their families, friends, caregivers, and even ALS medical professionals. Within the main forums, subforums and general categories exist, where specific topics are discussed and members’ questions are addressed.
What the forums is not:
I’ll admit to some initial concerns when I accepted the role of moderator. I wondered if the forums would get lost among the many other online groups. I was aware of discussions spiraling out of control on social media and worried about that happening in our forums.
Now eight months later, I can confidently say that my worries were unfounded.
Participating in the forums can be described as “having a seat at the adults’ table.”
Our forums has no distractions, random photos, ads, lost message threads, or spammers. We have civil conversations on several topics in threads that are easy to locate and follow.
No food fights or shin-kicks under the table. It feels as if we’re meeting in a library as opposed to a noisy coffee shop. Even gentle Mister Rogers would feel at home in our forums.
What have I learned from 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 forums members, we offer suggestions, helpful links, empathy, and support.
What do moderators do?
Between myself, a person living with ALS, and my co-moderator Amanda, who lives with a hereditary predisposition — genetic mutation — to ALS, we share a personal knowledge of and experience with the disease.
We are good hosts, welcoming new members, adding to ongoing conversations, and offering up new topics when needed.
We know that ALS can be isolating. Members may be the only person in their town living with the disease or have limited mobility and communication. Our forums help to keep people connected. We are a virtual, modern support group that extends around the world.
An open invitation
If you’re one of our 355 members, I say, “Hello!” I look forward to many future conversations together.
If you’re not yet a member — join us! We’d love to meet you and have you share your thoughts with us. There’s always “room at the table.”
Or, to borrow from Mister Rogers, “Won’t you be … a member?”
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 Services, and are intended to spark discussion about issues pertaining to ALS.