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Do you find social media a useful ALS resource?
I’m a member of several groups on Facebook that are for pALS with the SOD1 mutation or on the drug QALSody. I find a great deal of information about ongoing research, clinical trials, and how other SOD1 pALS work through challenges. I find that this is a great support system in addition to the ALS News Today community.
Do you find social media a useful resource? Are you part of any social media groups? What kind of support or information do you seek from these sources?
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4 Replies
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Hi Amanda, I am in the same situation. Especialy the Facebook groups
about ALS research are quite often used and I am an active member. I
would love to see more interaction with the scientific world as a
patient, as I belife, that we as patients coud support more, than “just”
asking for fundings to support the research. 2025 was a project in Switzerland launched for more patient envolving: https://www.unimedsuisse.ch/aktuelles/gemeinsame-vision-der-fuenf-universitaetsspitaeler-der-schweiz-fuer-den-einbezug-von-patienten-und-angehoerigen
unimedsuisse.ch
Gemeinsame Vision der fünf Universitätsspitäler der Schweiz für den Einbezug von Patientinnen und Angehörigen :: Unimedsuisse.ch
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They have been a life saver for me! I joined Facebook when my Mom passed from ALS FTD in 2008 and finding the ALS community there was life changing. Since then, I have started several groups and have moderated several others. I love connecting people with resources and being plugged in to so many research organizations, support groups and others who have genetic ALS and FTD has helped me as I help others. I’m now helping get a couple of new sites ready for launch. ALS Care Companion allows users to ask questions about ALS and their system uses AI to search for relevant answers. They are looking for more Beta testers! als.community has also started as a great resource for everyone in the ALS world, whether you’re living with ALS or are a caregiver and there are libraries filled with information about research, legal and financial issues, impacts on relationships and more.
Social media has allowed people who are “locked in” and struggling physically or verbally to connect with others, to get college degrees, to brainstorm with others and to support advocacy efforts. I’ve become closer to SO many people who truly understand!!!
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Thanks Susan! Everything is helping our community!
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It’s been interesting for us. When we started our ALS journey, these groups were very helpful. We found answers to our question and got some good advice. Now that I have progressed pretty far, we are answering questions and providing advice.
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