2030 will be too late for anyone who currently has ALS. Currently we have no cure, and hope isn't enough. ALS patients deserve choices, of which now we have none. I am sitting here #dyingwaiting. Government red tape and big pharmaceuticals need to get over themselves. Make ALS a liveable disease. I'd be a lifetime customer of a drug that could hault this disease. Living with this disease and being told there is no cure is inhumane. Covid came and a year later inoculations were available. ALS has been a constant killer, but doesn't get enough attention, because it's a smaller number of people affected. As an ALS victim, I sit here and am watching my body deteriorate before my eyes. I struggle with simple every day tasks. But I'm supposed to be grateful I can still do anything on my own still. Lastly, families are victims too. I'm an only parent to my 12 yr old daughter. My heart breaks every day not knowing how long I have, and will I be around when she reaches teenage milestones. She'll be an orphan when my time is up. ALS victims deserve better because living on hope and praying for miracles is not saving lives. We need a cure now!
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