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#whatmakesmerareALS – – Question
For Rare Disease month, ALS News Today has a unique challenge going on – – use this link to read about it. If you don’t want to write your own story or put together a video, we want to make sure YOU are included as well! So let’s start a great string here with you answering a specific question for #whatmakesmerareALS:
Question: What is the one thing you wish others understood about living with ALS?
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1 Reply
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I worry that people have begun to think that just because we pALS and cALS use the new technologies to help us “live” with ALS, that our ALS community is “doing just fine” and doesn’t need more attention, funding, etc.
All the eye-gaze software, mobility scooters, power chairs, text-to-talk, grab bars and such don’t make up for the fact that we still don’t have a cure… or know the cause of ALS.
I wish that ALS had more visibility and awareness in the non-ALS community (the big wide world) – – we need to keep the pressure on.
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