Thank you very much for the #IceBucketChallenge from Thomas Pun, my schoolmate from ancient time, entrepreneur companion and passionate about tech. I know it is coming, just don’t know how to respond. I heard of and seen the ALS web site before alsa.org because of mistyping an open source project named exactly the same call ALSA alsa-project.org/ which one of the major contributor is Takashi Iwai that I work with in SUSE ( Don’t worry I’m not tagging you for ALS :). However I never have meet or know anyone personally that has this disease, the closest understand from my personally experience is actually a TV series I watch from Japan called 1 Litre of Tears en.wikipedia.org/wiki/1_Litre_of_Tears . That is a a story introduced me to another genetic disease with no cure call spinocerebellar ataxia (SCA). I cry like a baby when I was watching it and literally a litre of tears. I really get a mixed feeling when the sheep effect starting to happen in a lot of the video that people doing the #IceBucketChallenge for publicity, marketing, worst of all no reason etc. Their apathy to the disease itself or the patients, show no correlation to the donation they make or joyful, almost excitement they present in the video. I’m not 100% against the marketing effect of this event, it is for sure a very successful to bring awareness of ALS. However the respect to the patients and the awareness of this incurable disease may no longer be the main focus of this challenge anymore. It does get my thinking how to respond to this challenge. When I saw the initiation founder die in an accident (may or may not be associated with all the joy he get by the impact that he has made ) shown another side of this coin a good cause may or may not be running by the people that you trusted or understand. And the good cause may not be as good as they look. My contribution to the social welfare and charity is mostly not money, normally it is related to doing something meaningful to a targeted group of human being instead. Giving money to an org is not something I 100% agreed unless I contributed or fully understand how they operate. And medical research should be provided and supported by the government, not matter what kind of society. When I was young I created some kind of sympathy to disability and try to pretended to live like them from time to time. So I will try to walk to school with one leg, walk with my eyes close, doing things using only my left hand. Kind of like what Jack said in Flight Club “I wasnt really dying, I wasnt host to cancer or parasites; I was the warm little center that the life of this world crowded around” and “your pain as a white ball of healing light”. But when Marla show up, “she ruined everything”. And I hate following what everybody did, so I will create my own way of showing sympathy to the patients and donate to the associate that I understand more list https://ssl.msf.hk/donate/. Im not tagging anyone but I will post my experience tomorrow. Thanks
Posted on: Thu, 21 Aug 2014 04:38:22 +0000
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