The ALS ice bucket challenge has dominated social media for the last few weeks and has raised tens of millions of dollars for ALS research. Countless more people have now at least heard of ALS and have a basic understanding of the disease\u2019s effects on those who have it. This is all good news, right?<\/p>\n
Maybe. Slate<\/em> points out that the ALS Association is no closer to finding a treatment or cure after decades of research<\/a> and it\u2019s unlikely that a sudden influx of money will change that. And while ALS is a potentially fatal disease, it affects relatively few people. Does it make sense to throw $100 million (according to some estimates) at a single and rare medical condition? Would that $100 million have otherwise been spent on other charities that are more likely to achieve immediate results with the money (like feeding the hungry or developing new sources of clean water for poor communities)?<\/p>\n I won\u2019t be giving money to the ALS Association. To be clear, I also don\u2019t give money to charities related to spinal muscular atrophy (my disability). Medical research is a decades-long process that isn\u2019t going to yield results any faster because of my $100 dollar contribution. I certainly don\u2019t begrudge the ALS Association for its sudden windfall and I hope it puts the money to good use, but there must be a better way to fund and coordinate research in \u201corphan\u201d genetic diseases that otherwise attract little attention from the private sector. It would be great if the ice bucket challenge kicked off a more thoughtful conversation about that very topic. Unfortunately, thoughtful debate isn\u2019t a strength of social media. What\u2019s more likely is that donations to the ALS Association will fall off a cliff before long and the long-term benefits of the ice bucket challenge will be ambiguous at best.<\/p>\n","protected":false},"excerpt":{"rendered":" The ALS ice bucket challenge has dominated social media for the last few weeks and has raised tens of millions of dollars for ALS research. Countless more people have now at least heard of ALS and have a basic understanding of the disease\u2019s effects on those who have it. This is all good news, right? […]<\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"sfsi_plus_gutenberg_text_before_share":"","sfsi_plus_gutenberg_show_text_before_share":"","sfsi_plus_gutenberg_icon_type":"","sfsi_plus_gutenberg_icon_alignemt":"","sfsi_plus_gutenburg_max_per_row":"","jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[30],"tags":[],"class_list":["post-4386","post","type-post","status-publish","format-standard","hentry","category-current-affairs","category-30-id","post-seq-1","post-parity-odd","meta-position-corners","fix"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_shortlink":"https:\/\/wp.me\/p9Iwau-18K","jetpack_sharing_enabled":true,"jetpack_likes_enabled":true,"_links":{"self":[{"href":"https:\/\/the19thfloor.net\/index.php?rest_route=\/wp\/v2\/posts\/4386","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/the19thfloor.net\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/the19thfloor.net\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/the19thfloor.net\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/the19thfloor.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=4386"}],"version-history":[{"count":1,"href":"https:\/\/the19thfloor.net\/index.php?rest_route=\/wp\/v2\/posts\/4386\/revisions"}],"predecessor-version":[{"id":4387,"href":"https:\/\/the19thfloor.net\/index.php?rest_route=\/wp\/v2\/posts\/4386\/revisions\/4387"}],"wp:attachment":[{"href":"https:\/\/the19thfloor.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=4386"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/the19thfloor.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=4386"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/the19thfloor.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=4386"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}