aaronwinborn



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NewbieActivity: 3Merit: 0 To Hal Finney from a fellow Open Source Software Developer with ALS April 15, 2013, 03:55:00 PM #115



I hope, but do not expect, that you will eventually read this thread, if for no other than the inhuman effort required to create it.



I am familiar with your story, as I read it in the LessWrong forum a year ago or so. I was not familiar with your work on bitcoins, although in retrospect I could have taken a clue from your work in cryptography.



Hats off to you, sir, for you have helped through your continuing work with Open Source to make a better world.



As yourself, I am a member of the Stupid Club, of people diagnosed with ALS. As you do, I am relegated to communicating with the world with my eyes, in the form of a Tobii eye gaze tracker and Dasher. Also like yourself, I have and continue to contribute to Open Source Software, although it is in the form of Drupal, a content management system used to publish websites.



The proud father of two young children, I was surprised to learn just two years ago that my life expectancy had taken a plunge. Unlike many well-intentioned hopes in the thread you started, I understand the harsh prospects that you and I face, which is why I won't point to Stephen Hawking as inspiration; unless you're Stephen Hawking, there's little chance you'll survive the decade, and kudos to you if you do. I also won't urge you to rush out and try an experimental treatment; for you and I are not welcome to try them, as they don't want patients more than two years beyond diagnosis, for they don't want us throwing off their numbers with our likely deaths.



I wonder, though, about your thoughts about cryonics. I posted about my intention to seek cryonic preservation on a private ALS support group on Facebook, and was shocked by the angry responses I received, everything from I should trust in the eternal life promised by my Lord and savior, to I am stealing resources from the future and present generations by seeking immortality.



I have received a more welcome response from the cryonics and Open Source communities, but I did not expect the vitriol that I received from my fellow patients with a terminal illness. In retrospect, I guess that the one is self-selected, where the other is thrust onto us against our wills. It is perhaps, of course, wishful thinking, but I would have hoped for if not something along the lines of me too, where do I sign up, at least something a bit more supportive.



In any case, I do not expect to learn of your plans or even thoughts about cryonics, because I don't suspect you'll chance across this thread. But if you do, and you are planning for it, then I hope we'll meet on the other side. And if you, like me, have instead found yourself blindsided by the life insurance companies' unwillingness to chance on a terminally ill patient, then here is the link to the Society for Venturism



Stay strong,



Aaron Winborn



http://www.aaronwinborn.com/



Hal, I just read your heartwarming post over at https://bitcointalk.org/index.php?topic=155054.msg1643833#msg1643833 , and due to restrictions on this forum, find myself unable to post a response on that thread. Thus, I am posting here on the newbie forum.I hope, but do not expect, that you will eventually read this thread, if for no other than the inhuman effort required to create it.I am familiar with your story, as I read it in the LessWrong forum a year ago or so. I was not familiar with your work on bitcoins, although in retrospect I could have taken a clue from your work in cryptography.Hats off to you, sir, for you have helped through your continuing work with Open Source to make a better world.As yourself, I am a member of the Stupid Club, of people diagnosed with ALS. As you do, I am relegated to communicating with the world with my eyes, in the form of a Tobii eye gaze tracker and Dasher. Also like yourself, I have and continue to contribute to Open Source Software, although it is in the form of Drupal, a content management system used to publish websites.The proud father of two young children, I was surprised to learn just two years ago that my life expectancy had taken a plunge. Unlike many well-intentioned hopes in the thread you started, I understand the harsh prospects that you and I face, which is why I won't point to Stephen Hawking as inspiration; unless you're Stephen Hawking, there's little chance you'll survive the decade, and kudos to you if you do. I also won't urge you to rush out and try an experimental treatment; for you and I are not welcome to try them, as they don't want patients more than two years beyond diagnosis, for they don't want us throwing off their numbers with our likely deaths.I wonder, though, about your thoughts about cryonics. I posted about my intention to seek cryonic preservation on a private ALS support group on Facebook, and was shocked by the angry responses I received, everything from I should trust in the eternal life promised by my Lord and savior, to I am stealing resources from the future and present generations by seeking immortality.I have received a more welcome response from the cryonics and Open Source communities, but I did not expect the vitriol that I received from my fellow patients with a terminal illness. In retrospect, I guess that the one is self-selected, where the other is thrust onto us against our wills. It is perhaps, of course, wishful thinking, but I would have hoped for if not something along the lines of me too, where do I sign up, at least something a bit more supportive.In any case, I do not expect to learn of your plans or even thoughts about cryonics, because I don't suspect you'll chance across this thread. But if you do, and you are planning for it, then I hope we'll meet on the other side. And if you, like me, have instead found yourself blindsided by the life insurance companies' unwillingness to chance on a terminally ill patient, then here is the link to the Society for Venturism http://www.venturist.info/ , the organization responsible for the cryonic preservation of Kim Suozzi, and the charity which has taken up my similar cause.Stay strong,Aaron Winborn