As someone who’s similarly afflicted (not full-blown ALS), I can’t say I ever cared for this show-boating method to raise funds & “awareness” towards these illnesses. ALS in particular is a very brutal disease, and takes a heavy toll not only on the patient but the caregivers and support structure as well.
I suppose the sentiment is there, but to my mind it would be better if people would just contribute from their heart, and the MDA would try to target the money wisely. They regularly run this hokey promotion called a Lock-Up, where politicians & prominent public figures are put in “jail” based on contributions – I would rather see the lawbreakers in Gov’t genuinely incarcerated…
--- Lou Gehrig's Farewell Address, Yankee Stadium July 4, 1939.