Thanks for sharing your story and this video Xeni, and thanks to Antonio for sharing so much of himself, his family and his experience. At 23 I lost my 53 year old father to ALS. The cruel devastation this still incurable, nearly untreatable disease inflicts on the victim as well as his or her supporting family is like no other.
So many of the pieces I've seen in the second wave of coverage of the #ALSIceBucketChallenge have been written at arm's length -- discussing the tradeoffs of ALS versus other charities & other diseases; wondering if it's "worth it" to donate to this cause (given what else is going on in the world, the relatively small number of victims, etc.) -- as if the experiences Antonio, his mother, and all other ALS victims and families will go through (watch that portion of the video again) were unimportant background noise in an undergrad econ class hypothetical.
While policies and companies might prioritize causes and diseases with greater numbers, please don't begrudge the momentary light being cast upon a population that has suffered with little hope or support in the near dark for 75 years.