My Mom, who is sometimes a little behind on social media trends, asked me today what I think of #IceBucketChallenge. A few other folks have asked me recently as well, so heres my concise answer: Im happy that #IceBucketChallenge has (thus far) resulted in $7.6 million in new funds for ALS research, education, and patient services. BUT Facebook tells us that 1.2 million videos have been uploaded related to the challenge, meaning that the average donation per video is less than $6.50. (That figure does not contemplate videos shared via YouTube, Twitter, Instagram, or Vine -- if those platforms were counted, the total donation per video would likely be lower.) More importantly, the National ALS Society reports only 145,918 new donors since the challenge exploded on social media -- which means that only about 8 percent of people uploading videos are making donations of any amount. This figure would likely also be lower if you made a calculation based on new donors who made a contribution but did not upload a video. In addition, I am continually disappointed at the low number of videos that contain any kind of information about what the disease is, or how it effects its victims. Put one more way: The National MS Societys series of fundraising bike rides raised about $85 million in 2012 (the latest data I could find), based on participation by about 100,000 cyclists -- an average contribution of $850. And no one had to pour water over their head, and no ones Facebook feed got cluttered with unwanted wet T-shirt contests. To summarize: Im happy that the ALS Society is having a genuine moment on social media and that some new people are joining the fight to #StrikeOutALS. I wish the challenge had been better conceived in its initial form, and that the ratio of participants to donors demonstrated that a majority of people were actually engaged in fighting this horrible disease, instead of getting likes on Facebook. In case youre wondering: Amyotrophic lateral sclerosis (ALS), often referred to as Lou Gehrigs Disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to patients death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. To help my familys efforts to make a significant impact on research that will hopefully, eventually, find effective treatments, please consider supporting my brother, Erics fundraising efforts. He will run the NYC Marathon along with two of our cousins on Nov. 1 as a member of Team ALS, running in honor of our Mom, who has been fighting ALS since 2012. Click here to donate: https://crowdrise/TeamALSNYC2014/fundraiser/fightforfran Source: bostonglobe/business/2014/08/15/facebook-million-icebucketchallenge-videos-posted/24D8bnxFlrMce5BRTixAEM/story.html
Posted on: Sun, 17 Aug 2014 20:38:39 +0000
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