15 ms·

Amit Gupta needs you

886 points by mattangriffel 15y ago

johnnyjustice 15y ago
Does anyone have any updates on his search?
- josephmosby 15y ago
  I have been monitoring this for a few weeks. No luck thus far (as of 10/24). Seth Godin has been a pretty big champion, though, and I think that helped really get the word out there.
AndrewMoffat 15y ago
If this works out for him, it would be cool to see him champion other peoples' life-threatening needs as shamelessly as he's doing his own.
- kyleslattery 15y ago
  Sure, it may be focused on saving him, but that doesn't mean that what he's doing isn't good for other people too. Getting potential donors (especially in an under-represented group) to sign up for the bone marrow registry is a all around good thing, who cares if they're doing it because Amit got them to? They might end up being able to save someone else's life.
  - AndrewMoffat 15y ago
    I'm not sure what part of my comment you're addressing. The only real point I made was that his plight was shameless. I understand if saying that makes people upset, but it doesn't make it less true.
    - michaels0620 15y ago
      And repeating it doesn't make it any more true. In what sense his is plea for help shameless? Should he simply sit back, do nothing, and hope something works out? It's not like he is taking from others for his own benefit. Indeed as others have pointed out, it's likely that his campaign has benefited others, not only himself.
      - AndrewMoffat 15y ago
        I did not say it does not benefit anyone else. I just said it was shameless. shameless: 2. done without shame; without decency or modesty modesty: 1. having or showing a moderate or humble estimate of one's merits, importance, etc.;
        gks 15y ago
        Life and Death. At what point do you admit to yourself you love your life and want to continue to live? At that point, that's when shamelessness and modesty are thrown on the window and you do what you can to try to survive.
        suhastech 15y ago
        If whatever you are doing works out for you, it would be cool to see the point you are trying to make by commenting on other peoples' life-threatening needs shamelessly. I did not say that you are cynical. I just said you are shameless.
        iron_ball 15y ago
        In what philosophical framework does modesty or even decency come before preservation of one's own life? This isn't Breaking Bad -- making a website and asking for help is pretty well unimpeachable IMO.
        AndrewMoffat 15y ago
        He's not morally wrong, I'm saying the nature of what he's doing is shameless. Clearly this is an important issue to him, but he's vastly overestimating his importance to everyone else. If every person with a need had a poster plastered around the city with their name on it, every city would be covered from sidewalk to rooftop. I'm just calling it like I see it.
  - sundarurfriend 15y ago
    I guess HN doesn't have much experience dealing with trolls. Copy-pasta replies, repetitiveness, lack of rational argument and the _need_ to be contra-norm all point that way. Please, let's stop feeding this and letting it take up half the comment space on this.
    - 0x12 15y ago
      I fear that he's not actually trolling.
      - sundarurfriend 15y ago
        Yeah, it appeared like trolling only until he replied to your comment above. That seems to be the first thread he's attempted to apply some logic here.
- sector 15y ago
  He is using his name to get signups to the general national marrow donor program registry. It is possible to get tested just for Amit, but the default is that you get tested for a match to anybody who needs it.
- AndrewMoffat 15y ago
  Sad to see my comment being downvoted because people disagree with it. The point that I was making was that he's shameless about his needs. Most people who have needs like his can't create this type of platform and exposure to be heard. And it is shameless. Why do I care about amit gupta, and why are all his promotional materials centered around HIM, and not acute leukemia? People suffer every day who can't be heard like this, is it so wrong to bring up that uncomfortable fact? To the people saying, "well what he's doing is good for others, too!" Yes, I agree. But face it, he never would've done this had he never got acute leukemia. So my original hope remains: "if this works out for him, it would be cool to see him champion other peoples' life-threatening needs." With him seeing the direct benefit of these efforts on his life, it would be cool if he maybe took it a step further and continued it for others.
  - dminor 15y ago
    You keep saying "shameless" as if it's exceptional in some way. Why should he feel shame about trying to not die?
    - AndrewMoffat 15y ago
      shameless: 2. done without shame; without decency or modesty modesty: 1. having or showing a moderate or humble estimate of one's merits, importance, etc.;
      - jbenz 15y ago
        A) I think modesty no longer becomes a factor when you are desperately trying to save your own life. B) Sure, the design is a little flashy (I think it looks great, by the way), but I don't think he is being terribly immodest. He's not bragging about his accomplishments, he's just trying to get people to sign up as bone marrow donors, and he's using his personal plight as motivation.
        irondavycole 15y ago
        Designer of the site here. (Thank you for the kind words.) We wanted to do something upbeat and positive, a kind of join-the-movement and do-your-part vibe. If it were a story just about Amit, we might be more dire, but this is a much bigger cause and we wanted to express that.
- Avenger42 15y ago
  I had the same kind of thought after Christopher Reeve became paralyzed after his accident. I would think to myself "was he championing this cause prior to his accident? Then he doesn't deserve that much credit for doing it now, when it will benefit him". Then I realized - it doesn't matter. The fact that someone noticeable shines a light on a cause and makes it more likely to receive some form of advances or help is laudable, if for no other reason than it increases the amount of time that we all think about these things and realize that it can affect any of us. The only time I get frustrated about things like this is when I tell myself "yeah, but no one's helping out with my priority." But my priority is just as "selfish" - a friend of mine has a disease that gets almost no press. Still, why not cheer for those who spend any amount of time helping others? As soon as they cure / find treatments for these diseases, they'll have time to get to my friend's. So... I understand where you're coming from. But I think spending any amount of time denigrating someone for trying to help (even if it helps him- or herself) is counterproductive.
- urbanjunkie 15y ago
  Your need to have an opinion on this is actually pretty offensive. The guy wants to live. So stop this rather pathetic passive aggression.
  - AndrewMoffat 15y ago
    We all die, sorry to say. How you conduct yourself in the face of that fact is all that matters. But thanks for your opinion.
    - urbanjunkie 15y ago
      I don't really even know how to respond to that. I suspect you're not really sorry that we die, as you seem to think that when faced with death, the proper response is to accept one's fate. I would understand your attitude if setting up a website meant that kittens had to die, or someone else had to suffer, but seeing as this isn't a zero-sum game, I don't. How do you know that Amit isn't feeling ashamed of needing to publicise this? How do you know it's not his friends that have almost 'forced' him to do this? I honestly don't get why you felt you needed to unzip your flies and piss all over this. Has this triggered some personal memory?
      - AndrewMoffat 15y ago
        > you seem to think that when faced with death, the proper response is to accept one's fate. I think the proper response is to realize that millions of people are also faced with death, that everyone WILL be faced with death, and to temper your actions with modesty and humility. > Has this triggered some personal memory? How did you know...sobs.
- hyperbovine 15y ago
  Why would somebody be ashamed of trying to save their own life?
- webwright 15y ago
  This isn't any more shameless than a person who breaks their leg in the woods calling out for help. You shouldn't be ashamed to call out for help. If you're curious, I think that's why you're getting downvoted. Shameless, defined: (of a person or their conduct) Characterized by or showing a lack of shame. Shame, defined: A painful feeling of humiliation or distress caused by the consciousness of wrong or foolish behavior.
  - AndrewMoffat 15y ago
    shameless: 2. done without shame; without decency or modesty modesty: 1. having or showing a moderate or humble estimate of one's merits, importance, etc.;
    - webwright 15y ago
      So yeah-- you're ignoring the part of the definition that comes before the semicolon for shameless. And zeroing in on one word in that definition (modesty). I think you're playing semantician, and you're not playing particularly well. I don't think very many people would agree that Amit should feel shame for what he's doing. Question for you: Do you think he should feel shame for what he's done? If you broke your leg alone in the woods, would you cry out for help?
- akmiller 15y ago
  He is using his disease to call on his community (the relatively small community of technologists and entrepreneurs) to sign up to be bone marrow donors knowing very well that there is only a small chance any one of us will be a match for him but that we may very well be a match for someone else. So yes, he is championing other peoples' life-threatening needs!
- 0x12 15y ago
  Hey Andrew, I don't know you and you more than likely don't know me. But still I feel that I have to respond to you because the way you carry yourself here is in my opinion doing a disservice to yourself, to the community and to your employer. If you take up a position that is going to be this un-popular you should at least try to do a better job of explaining your reasons why than you have done in this thread. In principle, you have a point. Before Amit Gupta knew that he had leukemia, he in all likelihood would not have been nearly as motivated to improve the state of the art. But such is human nature. Strangers are statistics, people are tragedies. We can only relate to that which we ourselves have direct knowledge of, and the second best thing next to that is that someone that we know or care for has direct knowledge of. That is what makes things personal. And I think that is where you're missing the beat here. Amit Gupta is personal for a large enough number of people here (who likely aren't even in the right demographic to help him) that you are wrong about this being 'shameless'. It would be shameless if none of us had ever heard about Amit Gupta in the first place. And even though plenty of people here (likely including you, but I can't be sure of that) have never heard of him, lots of people have. We also have a lot in common with Amit Gupta. We're all either working in the IT business, working on start-ups and we're likely all at risk of being blindsided by a disease like this. Which is typically not on your radar when you're a 20 or 30 something working hard on your startups. So, just like it isn't proper to talk bad about people on their funeral it isn't proper to piss on those that have landed a very bad lottery ticket indeed and that are currently - with the help of some dedicated friends - trying to change the odds in their favor. Whether it will work or not is unknowable for now, and even if it does work it will likely be a thing with a very significant impact on the lives of Amit and those near him. If Amit should die you may come to regret your harsh words here quite a bit. In the meantime I hope that a match will come up and that Amit will be allright and that this will raise the awareness of how fragile life is, even when it seems as though you're doing just fine. If one day there will be a website titled andrewmoffatneedsyou.com then I will not hold any of this against you.
  - AndrewMoffat 15y ago
    > Whether it will work or not is unknowable for now, and even if it does work it will likely be a thing with a very significant impact on the lives of Amit and those near him. This alludes to my original comment. I hope he continues promoting this kind of thing if it helps him, but for other people, given that he has such a broad reach and lack of modesty. Is that so wrong to say? I know it is unpopular to say, but is it wrong to hope for? I have no problem with what is being done, just how it is being done. I don't wish Amit dies. I don't even know him. It is a tragedy that he has leukemia. But given the platform and reach he so clearly has, is he grateful and humbled for his ability to seek help on such a massive scale, that many dying people will never have? Doesn't sound like it. He wants life, but it doesn't sound like he has much respect for it. It sounds like he wants to live, but sounds like he only tangentially gives a damn about the cause which will save him (bone marrow transplants). It's very "me me me." As for my community and my employer, don't bring them into it. I'm my own person, with my own opinions, and those are whose opinions I express.
- jwco 15y ago
  I wonder if you excised the word "shamelessly" from this comment, if people would have had a more interesting discussion, i.e. about building a site that enables people (including non-hackers), say in similarly life-threatened positions, to spread word and bring people/marrow/blood/etc. to their aid, and perhaps too, the aid of anyone else in a similar situation. Because I think what you're calling for is interesting: a platform (like Facebook or Tumblr), instead of a single blog.
- mcantor 15y ago
  Perhaps you can link us to all of the wonderful things you are doing for other people commensurate to everything you do for your own benefit, as you seem to have this "modesty and humility" thing figured out.
- jessedhillon 15y ago
  It's both sad and ironic that you think you're being persecuted for calling out someone else's lack of humility. It's because you're being a troll, quite frankly. I know you can't see it, but that's how you're coming across. You claim to have a concern about the greater good and the millions who have leukemia, but from where I stand -- and pretty much everyone else -- you're using that to cover your asinine, judgmental opinion of what Amit's doing. If that was your true concern, there are a thousand ways to express it without injecting your judgment. If you cared about not being judgmental and effectively communicating your concern, you could easily have chosen one of those. Instead, you appear more concerned about calling out Amit for a trivial fault -- the guy is using the resources at his disposal to save his own life!
jgrahamc 15y ago
Who is Amit Gupta? That question doesn't seem to be answered on the site and the name isn't familiar to me.
- ollie 15y ago
  He founded http://photojojo.com/ http://photojojo.com/
- phuff 15y ago
  Amit Gupta started Jelly (http://workatjelly.com/ http://workatjelly.com/), the coworking space, and founded Photojojo (http://photojojo.com/ http://photojojo.com/). I don't know him personally, (friend of a friend), but he is a really nice guy.
  - erikpukinskis 15y ago
    Jelly wasn't just a coworking space, it was (as far as I understand) the first public coworking space. Surely before Jelly freelancers were working together, but Jelly was the first "come one, come all!" kind of coworking space. And it's free. And it makes sense. Amit is a "come one, come all" kind of guy, which is why so many people are rallying behind him.
    - kragen 15y ago
      > Jelly was the first "come one, come all!" kind of coworking space. I'm pretty sure random people could drop in at Spiral Muse. I mean, when I was there, they did a time or two. It just wasn't as well publicized.
      - kragen 15y ago
        Dude, what the fuck is wrong with you people? You get a comment from someone who was actually present at the very first coworking space who corrects a fact about the history of coworking, and it gets downmodded to -1? I'm fucking done here for a while. You people fucking suck.
dholowiski 15y ago
Wow... unlike most things on the web, thanks for providing a way for non-USA people to get involved! http://amitguptaneedsyou.tumblr.com/help-around-the-world http://amitguptaneedsyou.tumblr.com/help-around-the-world
inuhj 15y ago
Hi, im working on a bone marrow drive for Amit in Chicago. If you want to help drop me an email (edit: I put my email in the profile).
- jambo 15y ago
  Hi: HN doesn't support private messages, and it doesn't show your email address by default. If you want to let people message you, you have to explicitly put your email address in the about field in your profile (here: http://news.ycombinator.com/user?id=inuhj http://news.ycombinator.com/user?id=inuhj )
allanscu 15y ago
There will be a bunch of folks at FailCon in SF today. I encourage everybody to get a test.
manish_gill 15y ago
Hope it works out for him.
jpr 15y ago
Is it only South Asians that can possibly help, or is it just anybody?
rkudeshi 15y ago
I applied for a kit when I first heard about this, but the kit's been sitting on my desk for a couple days. I just went ahead and did the swabbing. It was very simple, took only 2 minutes, and was completely non-invasive. (It was also completely free.) If you haven't signed up yet, please do so. Even if you don't care about Amit (I have no idea who he is), you might be able to help someone else in need.
- nhangen 15y ago
  I did the same, but have not swabbed. My primary concern is that of privacy. I don't really trust that a record of my DNA/swab test won't end up somewhere it's not supposed to be.
  - unreal37 15y ago
    You leave DNA everywhere you go. Every time you sit in a chair, every time you drink from a cup, pee in a public urinal, open a door handle ... You give blood tests to your doctor, and don't demand to see the privacy policy of the lab and all the handlers in between. You worry too much. :) No one wants your DNA - and if they wanted it they could easily get it. Take the test and possibly save a life. Edited: to add a smiley face and improve the tone, since this was intended to be a "don't worry be happy" message and not "you're a bad human being". Sorry about that.
    - sundarurfriend 15y ago
      You might or might not be correct, but it's quite difficult to get your point across with that kind of a tone. Talking in favor of someone suffering from leukemia doesn't automatically grant you rights to spew personal insults at someone.
      - cgarvey 15y ago
        I didn't see any personal insults, mostly just logic delivered unapologetically.
oconnore 15y ago
IGNORANCE: The concept of donating bone marrow terrifies me. I imagine a doctor drilling into my skeleton and using a large needle to suck out the gooey stuff that makes my blood. It sounds absolutely horrific. If I were ever to consider doing this, someone would have to educate me to the point where my perceived safety is high. Right now I know that this probably won't kill me, but I don't understand it enough to trust it. I imagine that I am not the only person in this situation. I also felt terrible writing this. My fear is absolutely petty compared to the fear of being struck down by leukemia. Perhaps that's why I felt obligated to share.
- jwco 15y ago
  The first question of the FAQ (http://amitguptaneedsyou.tumblr.com/faq http://amitguptaneedsyou.tumblr.com/faq) should have you assuaged.
  - oconnore 15y ago
    It really doesn't, sorry. I have no idea what any of that means, and I don't even understand what exactly my bone marrow does, never mind how much of it I can lose before something bad happens. I have lost blood before, like when I scraped my knee falling off a bike. I have never had my blood filtered for stem cells. Don't I need those? And I am a college educated person. If I got through school with this level of ignorance about the bone marrow donation process, there are probably millions of other people with similar ignorance about the issue (and likely, those people are not as quick to do research, as I am doing now). I don't think a few sentences in a FAQ is enough to combat this.
    - jwco 15y ago
      Fair enough. I don't know much about Peripheral Blood Stem Cells in particular, but I am under the impression that stem cells in general are not serving much of a purpose besides waiting around to become differentiated into other cell types. But I wouldn't be too worried about giving up any of your cells, besides brain/nerve cells. Almost all our cells have the same genetic information (Red Blood Cells are one exception), so it is theoretically possible to turn one type into just about any other. Shinya Yamanaka's team made a huge step in that direction experimentally about 5 years ago: http://en.wikipedia.org/wiki/Induced_Pluripotent_Stem_Cell http://en.wikipedia.org/wiki/Induced_Pluripotent_Stem_Cell I'm not saying that this is a viable option if you run out of PBSCs (just as it is clearly not yet an option for you to donate skin cells to help Amit), so one thing you may want to find out is if your PBSCs are limited in supply--I don't know (and I am also not in the right demographic for this donation).
danielna 15y ago
Hi all, Long time reader but never posted before. If anyone here will be attending, I'll be manning the National Marrow Donor Program booth registering donors this Saturday, October 29 at TEDxMidAtlantic in Washington DC (http://tedxmidatlantic.com/ http://tedxmidatlantic.com/). While the booth is intended to be in Amit's honor, I strongly encourage any minorities to join the registry, as the need is severe across all ethnic groups. I'm an AML survivor myself (though no BMT, chemo-only), and I can't emphasize enough that the decision to join the registry is opening yourself up to the opportunity to literally save someone else's life.
deleted 15y ago
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manish 15y ago
I have registered for the test kit. I really appreciate the way amit and friends have set up the campaign. This gives maximum chance for him to survive and also helps other victims as well, since they might contact you if some one else needs help. Good luck Amit, I hope you will pull through it.
justinj 15y ago
while i think the cause is great, i can't help but feel a little sad that it has taken this event to spur everyone in the community to a more philanthropic direction. many of us here are looking to become rich and successful and forget that in many ways, we are already very wealthy. honestly, i think it's a good time to think of all the positive things we can do with what we have - including using our technical knowhow to make the world a better place for those less fortunate.
biot 15y ago
Does testing from the swab kits match you up with anyone in need of bone marrow? I have a coworker with leukemia too and I'm sure many others here know of similar situations and it'd be great to have a resource that works for everyone. Posting individual stories doesn't scale very well.
- jey 15y ago
  Yes, it enters you into the National Marrow Donor Registry. Posting individual stories works better than statistics because it motivates people much more (yet another quirk of our psychology).
  - raleec 15y ago
    "A Single Death is a Tragedy; a Million Deaths is a Statistic"
- jberryman 15y ago
  A poster above cited the 1 in 500 chance of being called if you're on the registry. For me that's both a good chance you won't have to bother with getting poked with a needle, and a decent chance that you might have the opportunity to save someone's freaking life.
spencerfry 15y ago
Amit is a pal. One of the nicest guys you'll EVER meet. Period.
jeremymims 15y ago
I joined one of the drives a week ago in New York. Swabbing your cheek is easy, filling out the form is easy, and even though the odds are I'm not a match for Amit, I may one day be the match for someone else. From what I understand, the procedures for donation have gotten simpler and less invasive all the time. Giving up a day for the chance to save someone's life is an absolute no-brainer. Easiest decision I'll ever make. Go get on the list.
hugh3 15y ago
If South Asians are severely under-represented in the US bone marrow donor registry, can't we just buy bone marrow from donors in (say) India?
- potatolicious 15y ago
  There are numerous ethical issues surrounding the commercial/free-market trade of human organs. Most simply: - There is, naturally, demand for bone marrow transplants in India. What are the moral and ethical implications of denying someone there (of presumably lower economic ability) a transplant so they can supply someone in the US (of presumably much higher economic ability)? If they were swimming in an excess of willing donors, perhaps this would be less of an issue, but I don't know any country in the world where there is a surplus of bone marrow donors. - What incentive structure does this create, and what does it mean for us if we legitimize commercial organ trade? How many donations will be voluntary, or will we see an explosion in "donations", forced upon the disenfranchised and vulnerable? I'd be very wary of walking down the path of commercialized organ trade.
  - edanm 15y ago
    Interestingly though, this isn't "organ" trade, because the resource in question is replenished by the body within a few weeks. So it isn't really depriving anyone of anything to donate bone marrow.
tibbon 15y ago
I just registered for a bone marrow match drive tomorrow at OSU. While I'm 100% sure I'm not a match for Amit, I hope that many people show up, and that I'm a match for someone.
mccooscoos 15y ago
I don't understand why blood, marrow, and organs have to be donated. I agree that the concept is discussing, but in a life and death situation people should be able to pay to "encourage" a donor. Already there are a lot of people who go to third world countries to buy organs. If it was legal to buy organs people wouldn't have to risk the unsanitary operation condition. Furthermore, seeing as giving blood or marrow is less dangerous there should be no reason not to allow people to buy them.
stuntgoat 15y ago
There have been some great results in the news recently regarding CAR T cells in the treatment of Chronic Lymphocytic Leukemia. I think this one might be a winner. http://news.ycombinator.com/item?id=2873604 http://news.ycombinator.com/item?id=2873604 http://penncancer.org/cart-19 http://penncancer.org/cart-19 From what I understand about this treatment, blood is removed from the patient and 'infected' with a harmless HIV virus that has been modified to attach a molecule to T cells. This molecule binds to a receptor (CD19) on the cancer cell, thereby creating T cells that attack the cancer cells. The treated blood is injected back to the patient and the patients body creates more of these cells on it's own- effectively creating an immune response to the cancer cells. Do you think a subset of HN readers could somehow facilitate a project that could help the labs researching ( or planning on researching ) methods for expanding this method of treating cancer? I would like to ( and inspire people here to ): 1) find the available labs that can best perform the _steps_ required for this treatment _process_. Basically, get a list of labs. 2) help expedite iterative methods for techniques that: a) speed the development time of the specific _step(s)_, and/or b) broaden the efficacy of the overall treatment _process_ ( ie. treat other cancers ). Basically, list the _steps_ in the _process_ and see if there is a way to make them faster, better. 3) create tools that allow the people and labs working on this _process_ to communicate as efficiently as possible. Basically, learn how the different labs work and write tools that streamline their collaborative workflow. I have a feeling there are many smart people on this site with free time ( ie. visiting this site often ), technical resources, and organizing skills that could make this happen- fast. Shoot me an email with questions/comments/complaints if you don't want to comment on this thread; I want to help.
jberryman 15y ago
I'm boring white western European, but signed up and should get my swab kit in 2 weeks. Maybe I can help someone else.
tonybgoode 15y ago
Not that it will matter to the trolls, but it's worth noting: The vast majority of championing for this cause is happening on behalf of Amit, not by Amit himself. He was actually quite reluctant to be public about his condition, and has only stepped forward at the encouragement of people close to him. While Amit is at the center of this effort, the narrative has quickly widened to address the much larger issue of underrepresented populations in the bone marrow database. The impact of the efforts inspired by Amit's situation will be felt far beyond that of one person. Even as he fights for his life undergoing intense chemotherapy and all kinds of difficulties most of us have no appreciation for, he continues to do the best he can to help people. Anyone who does that deserves not just our respect and admiration, but our attention and participation. If anyone feels like being self righteous, they might do well to channel that energy into doing something that helps the world instead of leaving insidious comments on a thread.
srik 15y ago
Why not go to a good private hospital somewhere in South India. Amit probably has a better chance of finding a matching donor there and the procedure, I'm assuming, is less expensive than over here.
rdl 15y ago
I know some other people on the list, and was looking at signing up, but got really annoyed that all the registries seem to demand a third party or multiple third party contact info in order to submit a sample.
- extension 15y ago
  They do this so that they have more ways to contact you if you are a match some day. Apparently not being able to contact matches, due to outdated contact info, is a big problem. Like, on the order of 50%. It's still annoying but at least it has a legit purpose.
  - deleted 15y ago
    [deleted]
tdfx 15y ago
Call me paranoid, but can you use a slightly different name in the registry to keep the prying hands of the state off your voluntary DNA sample? Has there been any known cases of the police using this registry to obtain evidence for prosecutions?
param 15y ago
Sad! I am south asian and I just tried to register - they refused to sign me up as I have had hepatitis B in the past. In India, this is so common that people don't even know they have had it (I came to know about it 10 years after having it). I just remember having 'jaundice' once.
- roshanr 15y ago
  If you've had jaundice as a kid in India, it was probably hepatitis A, in which case you are allowed to join. Probably worth double checking.
  - param 15y ago
    I came to know about it after 10 years because I went to a doctor in the US for some check up. Thanks for cross-checking though
abbasmehdi 15y ago
Just got the wife's permission and signed up, wish us luck.
paolomaffei 15y ago
Isn't this a bit selfish?
6841iam 15y ago
Once someone with AML gets a marrow what does their 1 year prognosis look like? I computed cancer "yield" a year ago based on cancer data from the state of New York, and Leukemia is (unfortunately) a pretty devastating cancer: http://d0j.blogspot.com/2010/05/cancer-incidence-and-state-of-new-york.html http://d0j.blogspot.com/2010/05/cancer-incidence-and-state-o...
ajtaylor 15y ago
I'm not in the US, and I'm a white Caucasian, so it won't be any help to Amit. But when the Australian Red Cross phoned me up this morning to set an appointment to donate blood I also told them I wanted to get registered as a bone marrow donor. Until yesterday, I had no idea they could now extract bone marrow cells via blood. Excellent timing on both the post and the phone call!

886 points by mattangriffel 15y ago

johnnyjustice 15y ago

Does anyone have any updates on his search?

josephmosby 15y ago
I have been monitoring this for a few weeks. No luck thus far (as of 10/24). Seth Godin has been a pretty big champion, though, and I think that helped really get the word out there.

AndrewMoffat 15y ago

If this works out for him, it would be cool to see him champion other peoples' life-threatening needs as shamelessly as he's doing his own.

kyleslattery 15y ago
Sure, it may be focused on saving him, but that doesn't mean that what he's doing isn't good for other people too. Getting potential donors (especially in an under-represented group) to sign up for the bone marrow registry is a all around good thing, who cares if they're doing it because Amit got them to? They might end up being able to save someone else's life.
- AndrewMoffat 15y ago
  I'm not sure what part of my comment you're addressing. The only real point I made was that his plight was shameless. I understand if saying that makes people upset, but it doesn't make it less true.
  - michaels0620 15y ago
    And repeating it doesn't make it any more true. In what sense his is plea for help shameless? Should he simply sit back, do nothing, and hope something works out? It's not like he is taking from others for his own benefit. Indeed as others have pointed out, it's likely that his campaign has benefited others, not only himself.
    - AndrewMoffat 15y ago
      I did not say it does not benefit anyone else. I just said it was shameless. shameless: 2. done without shame; without decency or modesty modesty: 1. having or showing a moderate or humble estimate of one's merits, importance, etc.;
      - gks 15y ago
        Life and Death. At what point do you admit to yourself you love your life and want to continue to live? At that point, that's when shamelessness and modesty are thrown on the window and you do what you can to try to survive.
      - suhastech 15y ago
        If whatever you are doing works out for you, it would be cool to see the point you are trying to make by commenting on other peoples' life-threatening needs shamelessly. I did not say that you are cynical. I just said you are shameless.
      - iron_ball 15y ago
        In what philosophical framework does modesty or even decency come before preservation of one's own life? This isn't Breaking Bad -- making a website and asking for help is pretty well unimpeachable IMO.
        AndrewMoffat 15y ago
        He's not morally wrong, I'm saying the nature of what he's doing is shameless. Clearly this is an important issue to him, but he's vastly overestimating his importance to everyone else. If every person with a need had a poster plastered around the city with their name on it, every city would be covered from sidewalk to rooftop. I'm just calling it like I see it.
- sundarurfriend 15y ago
  I guess HN doesn't have much experience dealing with trolls. Copy-pasta replies, repetitiveness, lack of rational argument and the _need_ to be contra-norm all point that way. Please, let's stop feeding this and letting it take up half the comment space on this.
  - 0x12 15y ago
    I fear that he's not actually trolling.
    - sundarurfriend 15y ago
      Yeah, it appeared like trolling only until he replied to your comment above. That seems to be the first thread he's attempted to apply some logic here.
sector 15y ago
He is using his name to get signups to the general national marrow donor program registry. It is possible to get tested just for Amit, but the default is that you get tested for a match to anybody who needs it.
AndrewMoffat 15y ago
Sad to see my comment being downvoted because people disagree with it. The point that I was making was that he's shameless about his needs. Most people who have needs like his can't create this type of platform and exposure to be heard. And it is shameless. Why do I care about amit gupta, and why are all his promotional materials centered around HIM, and not acute leukemia? People suffer every day who can't be heard like this, is it so wrong to bring up that uncomfortable fact? To the people saying, "well what he's doing is good for others, too!" Yes, I agree. But face it, he never would've done this had he never got acute leukemia. So my original hope remains: "if this works out for him, it would be cool to see him champion other peoples' life-threatening needs." With him seeing the direct benefit of these efforts on his life, it would be cool if he maybe took it a step further and continued it for others.
- dminor 15y ago
  You keep saying "shameless" as if it's exceptional in some way. Why should he feel shame about trying to not die?
  - AndrewMoffat 15y ago
    shameless: 2. done without shame; without decency or modesty modesty: 1. having or showing a moderate or humble estimate of one's merits, importance, etc.;
    - jbenz 15y ago
      A) I think modesty no longer becomes a factor when you are desperately trying to save your own life. B) Sure, the design is a little flashy (I think it looks great, by the way), but I don't think he is being terribly immodest. He's not bragging about his accomplishments, he's just trying to get people to sign up as bone marrow donors, and he's using his personal plight as motivation.
      - irondavycole 15y ago
        Designer of the site here. (Thank you for the kind words.) We wanted to do something upbeat and positive, a kind of join-the-movement and do-your-part vibe. If it were a story just about Amit, we might be more dire, but this is a much bigger cause and we wanted to express that.
Avenger42 15y ago
I had the same kind of thought after Christopher Reeve became paralyzed after his accident. I would think to myself "was he championing this cause prior to his accident? Then he doesn't deserve that much credit for doing it now, when it will benefit him". Then I realized - it doesn't matter. The fact that someone noticeable shines a light on a cause and makes it more likely to receive some form of advances or help is laudable, if for no other reason than it increases the amount of time that we all think about these things and realize that it can affect any of us. The only time I get frustrated about things like this is when I tell myself "yeah, but no one's helping out with my priority." But my priority is just as "selfish" - a friend of mine has a disease that gets almost no press. Still, why not cheer for those who spend any amount of time helping others? As soon as they cure / find treatments for these diseases, they'll have time to get to my friend's. So... I understand where you're coming from. But I think spending any amount of time denigrating someone for trying to help (even if it helps him- or herself) is counterproductive.
urbanjunkie 15y ago
Your need to have an opinion on this is actually pretty offensive. The guy wants to live. So stop this rather pathetic passive aggression.
- AndrewMoffat 15y ago
  We all die, sorry to say. How you conduct yourself in the face of that fact is all that matters. But thanks for your opinion.
  - urbanjunkie 15y ago
    I don't really even know how to respond to that. I suspect you're not really sorry that we die, as you seem to think that when faced with death, the proper response is to accept one's fate. I would understand your attitude if setting up a website meant that kittens had to die, or someone else had to suffer, but seeing as this isn't a zero-sum game, I don't. How do you know that Amit isn't feeling ashamed of needing to publicise this? How do you know it's not his friends that have almost 'forced' him to do this? I honestly don't get why you felt you needed to unzip your flies and piss all over this. Has this triggered some personal memory?
    - AndrewMoffat 15y ago
      > you seem to think that when faced with death, the proper response is to accept one's fate. I think the proper response is to realize that millions of people are also faced with death, that everyone WILL be faced with death, and to temper your actions with modesty and humility. > Has this triggered some personal memory? How did you know...sobs.
hyperbovine 15y ago
Why would somebody be ashamed of trying to save their own life?
webwright 15y ago
This isn't any more shameless than a person who breaks their leg in the woods calling out for help. You shouldn't be ashamed to call out for help. If you're curious, I think that's why you're getting downvoted. Shameless, defined: (of a person or their conduct) Characterized by or showing a lack of shame. Shame, defined: A painful feeling of humiliation or distress caused by the consciousness of wrong or foolish behavior.
- AndrewMoffat 15y ago
  shameless: 2. done without shame; without decency or modesty modesty: 1. having or showing a moderate or humble estimate of one's merits, importance, etc.;
  - webwright 15y ago
    So yeah-- you're ignoring the part of the definition that comes before the semicolon for shameless. And zeroing in on one word in that definition (modesty). I think you're playing semantician, and you're not playing particularly well. I don't think very many people would agree that Amit should feel shame for what he's doing. Question for you: Do you think he should feel shame for what he's done? If you broke your leg alone in the woods, would you cry out for help?
akmiller 15y ago
He is using his disease to call on his community (the relatively small community of technologists and entrepreneurs) to sign up to be bone marrow donors knowing very well that there is only a small chance any one of us will be a match for him but that we may very well be a match for someone else. So yes, he is championing other peoples' life-threatening needs!
0x12 15y ago
Hey Andrew, I don't know you and you more than likely don't know me. But still I feel that I have to respond to you because the way you carry yourself here is in my opinion doing a disservice to yourself, to the community and to your employer. If you take up a position that is going to be this un-popular you should at least try to do a better job of explaining your reasons why than you have done in this thread. In principle, you have a point. Before Amit Gupta knew that he had leukemia, he in all likelihood would not have been nearly as motivated to improve the state of the art. But such is human nature. Strangers are statistics, people are tragedies. We can only relate to that which we ourselves have direct knowledge of, and the second best thing next to that is that someone that we know or care for has direct knowledge of. That is what makes things personal. And I think that is where you're missing the beat here. Amit Gupta is personal for a large enough number of people here (who likely aren't even in the right demographic to help him) that you are wrong about this being 'shameless'. It would be shameless if none of us had ever heard about Amit Gupta in the first place. And even though plenty of people here (likely including you, but I can't be sure of that) have never heard of him, lots of people have. We also have a lot in common with Amit Gupta. We're all either working in the IT business, working on start-ups and we're likely all at risk of being blindsided by a disease like this. Which is typically not on your radar when you're a 20 or 30 something working hard on your startups. So, just like it isn't proper to talk bad about people on their funeral it isn't proper to piss on those that have landed a very bad lottery ticket indeed and that are currently - with the help of some dedicated friends - trying to change the odds in their favor. Whether it will work or not is unknowable for now, and even if it does work it will likely be a thing with a very significant impact on the lives of Amit and those near him. If Amit should die you may come to regret your harsh words here quite a bit. In the meantime I hope that a match will come up and that Amit will be allright and that this will raise the awareness of how fragile life is, even when it seems as though you're doing just fine. If one day there will be a website titled andrewmoffatneedsyou.com then I will not hold any of this against you.
- AndrewMoffat 15y ago
  > Whether it will work or not is unknowable for now, and even if it does work it will likely be a thing with a very significant impact on the lives of Amit and those near him. This alludes to my original comment. I hope he continues promoting this kind of thing if it helps him, but for other people, given that he has such a broad reach and lack of modesty. Is that so wrong to say? I know it is unpopular to say, but is it wrong to hope for? I have no problem with what is being done, just how it is being done. I don't wish Amit dies. I don't even know him. It is a tragedy that he has leukemia. But given the platform and reach he so clearly has, is he grateful and humbled for his ability to seek help on such a massive scale, that many dying people will never have? Doesn't sound like it. He wants life, but it doesn't sound like he has much respect for it. It sounds like he wants to live, but sounds like he only tangentially gives a damn about the cause which will save him (bone marrow transplants). It's very "me me me." As for my community and my employer, don't bring them into it. I'm my own person, with my own opinions, and those are whose opinions I express.
jwco 15y ago
I wonder if you excised the word "shamelessly" from this comment, if people would have had a more interesting discussion, i.e. about building a site that enables people (including non-hackers), say in similarly life-threatened positions, to spread word and bring people/marrow/blood/etc. to their aid, and perhaps too, the aid of anyone else in a similar situation. Because I think what you're calling for is interesting: a platform (like Facebook or Tumblr), instead of a single blog.
mcantor 15y ago
Perhaps you can link us to all of the wonderful things you are doing for other people commensurate to everything you do for your own benefit, as you seem to have this "modesty and humility" thing figured out.
jessedhillon 15y ago
It's both sad and ironic that you think you're being persecuted for calling out someone else's lack of humility. It's because you're being a troll, quite frankly. I know you can't see it, but that's how you're coming across. You claim to have a concern about the greater good and the millions who have leukemia, but from where I stand -- and pretty much everyone else -- you're using that to cover your asinine, judgmental opinion of what Amit's doing. If that was your true concern, there are a thousand ways to express it without injecting your judgment. If you cared about not being judgmental and effectively communicating your concern, you could easily have chosen one of those. Instead, you appear more concerned about calling out Amit for a trivial fault -- the guy is using the resources at his disposal to save his own life!

jgrahamc 15y ago

Who is Amit Gupta? That question doesn't seem to be answered on the site and the name isn't familiar to me.

ollie 15y ago
He founded http://photojojo.com/ http://photojojo.com/
phuff 15y ago
Amit Gupta started Jelly (http://workatjelly.com/ http://workatjelly.com/), the coworking space, and founded Photojojo (http://photojojo.com/ http://photojojo.com/). I don't know him personally, (friend of a friend), but he is a really nice guy.
- erikpukinskis 15y ago
  Jelly wasn't just a coworking space, it was (as far as I understand) the first public coworking space. Surely before Jelly freelancers were working together, but Jelly was the first "come one, come all!" kind of coworking space. And it's free. And it makes sense. Amit is a "come one, come all" kind of guy, which is why so many people are rallying behind him.
  - kragen 15y ago
    > Jelly was the first "come one, come all!" kind of coworking space. I'm pretty sure random people could drop in at Spiral Muse. I mean, when I was there, they did a time or two. It just wasn't as well publicized.
    - kragen 15y ago
      Dude, what the fuck is wrong with you people? You get a comment from someone who was actually present at the very first coworking space who corrects a fact about the history of coworking, and it gets downmodded to -1? I'm fucking done here for a while. You people fucking suck.

dholowiski 15y ago

Wow... unlike most things on the web, thanks for providing a way for non-USA people to get involved! http://amitguptaneedsyou.tumblr.com/help-around-the-world http://amitguptaneedsyou.tumblr.com/help-around-the-world

inuhj 15y ago

Hi, im working on a bone marrow drive for Amit in Chicago. If you want to help drop me an email (edit: I put my email in the profile).

jambo 15y ago
Hi: HN doesn't support private messages, and it doesn't show your email address by default. If you want to let people message you, you have to explicitly put your email address in the about field in your profile (here: http://news.ycombinator.com/user?id=inuhj http://news.ycombinator.com/user?id=inuhj )

allanscu 15y ago

There will be a bunch of folks at FailCon in SF today. I encourage everybody to get a test.

manish_gill 15y ago

Hope it works out for him.

jpr 15y ago

Is it only South Asians that can possibly help, or is it just anybody?

rkudeshi 15y ago

I applied for a kit when I first heard about this, but the kit's been sitting on my desk for a couple days. I just went ahead and did the swabbing. It was very simple, took only 2 minutes, and was completely non-invasive. (It was also completely free.) If you haven't signed up yet, please do so. Even if you don't care about Amit (I have no idea who he is), you might be able to help someone else in need.

nhangen 15y ago
I did the same, but have not swabbed. My primary concern is that of privacy. I don't really trust that a record of my DNA/swab test won't end up somewhere it's not supposed to be.
- unreal37 15y ago
  You leave DNA everywhere you go. Every time you sit in a chair, every time you drink from a cup, pee in a public urinal, open a door handle ... You give blood tests to your doctor, and don't demand to see the privacy policy of the lab and all the handlers in between. You worry too much. :) No one wants your DNA - and if they wanted it they could easily get it. Take the test and possibly save a life. Edited: to add a smiley face and improve the tone, since this was intended to be a "don't worry be happy" message and not "you're a bad human being". Sorry about that.
  - sundarurfriend 15y ago
    You might or might not be correct, but it's quite difficult to get your point across with that kind of a tone. Talking in favor of someone suffering from leukemia doesn't automatically grant you rights to spew personal insults at someone.
    - cgarvey 15y ago
      I didn't see any personal insults, mostly just logic delivered unapologetically.

oconnore 15y ago

IGNORANCE: The concept of donating bone marrow terrifies me. I imagine a doctor drilling into my skeleton and using a large needle to suck out the gooey stuff that makes my blood. It sounds absolutely horrific. If I were ever to consider doing this, someone would have to educate me to the point where my perceived safety is high. Right now I know that this probably won't kill me, but I don't understand it enough to trust it. I imagine that I am not the only person in this situation. I also felt terrible writing this. My fear is absolutely petty compared to the fear of being struck down by leukemia. Perhaps that's why I felt obligated to share.

jwco 15y ago
The first question of the FAQ (http://amitguptaneedsyou.tumblr.com/faq http://amitguptaneedsyou.tumblr.com/faq) should have you assuaged.
- oconnore 15y ago
  It really doesn't, sorry. I have no idea what any of that means, and I don't even understand what exactly my bone marrow does, never mind how much of it I can lose before something bad happens. I have lost blood before, like when I scraped my knee falling off a bike. I have never had my blood filtered for stem cells. Don't I need those? And I am a college educated person. If I got through school with this level of ignorance about the bone marrow donation process, there are probably millions of other people with similar ignorance about the issue (and likely, those people are not as quick to do research, as I am doing now). I don't think a few sentences in a FAQ is enough to combat this.
  - jwco 15y ago
    Fair enough. I don't know much about Peripheral Blood Stem Cells in particular, but I am under the impression that stem cells in general are not serving much of a purpose besides waiting around to become differentiated into other cell types. But I wouldn't be too worried about giving up any of your cells, besides brain/nerve cells. Almost all our cells have the same genetic information (Red Blood Cells are one exception), so it is theoretically possible to turn one type into just about any other. Shinya Yamanaka's team made a huge step in that direction experimentally about 5 years ago: http://en.wikipedia.org/wiki/Induced_Pluripotent_Stem_Cell http://en.wikipedia.org/wiki/Induced_Pluripotent_Stem_Cell I'm not saying that this is a viable option if you run out of PBSCs (just as it is clearly not yet an option for you to donate skin cells to help Amit), so one thing you may want to find out is if your PBSCs are limited in supply--I don't know (and I am also not in the right demographic for this donation).

danielna 15y ago

Hi all, Long time reader but never posted before. If anyone here will be attending, I'll be manning the National Marrow Donor Program booth registering donors this Saturday, October 29 at TEDxMidAtlantic in Washington DC (http://tedxmidatlantic.com/ http://tedxmidatlantic.com/). While the booth is intended to be in Amit's honor, I strongly encourage any minorities to join the registry, as the need is severe across all ethnic groups. I'm an AML survivor myself (though no BMT, chemo-only), and I can't emphasize enough that the decision to join the registry is opening yourself up to the opportunity to literally save someone else's life.

deleted 15y ago

[deleted]

manish 15y ago

I have registered for the test kit. I really appreciate the way amit and friends have set up the campaign. This gives maximum chance for him to survive and also helps other victims as well, since they might contact you if some one else needs help. Good luck Amit, I hope you will pull through it.

justinj 15y ago

while i think the cause is great, i can't help but feel a little sad that it has taken this event to spur everyone in the community to a more philanthropic direction. many of us here are looking to become rich and successful and forget that in many ways, we are already very wealthy. honestly, i think it's a good time to think of all the positive things we can do with what we have - including using our technical knowhow to make the world a better place for those less fortunate.

biot 15y ago

Does testing from the swab kits match you up with anyone in need of bone marrow? I have a coworker with leukemia too and I'm sure many others here know of similar situations and it'd be great to have a resource that works for everyone. Posting individual stories doesn't scale very well.

jey 15y ago
Yes, it enters you into the National Marrow Donor Registry. Posting individual stories works better than statistics because it motivates people much more (yet another quirk of our psychology).
- raleec 15y ago
  "A Single Death is a Tragedy; a Million Deaths is a Statistic"
jberryman 15y ago
A poster above cited the 1 in 500 chance of being called if you're on the registry. For me that's both a good chance you won't have to bother with getting poked with a needle, and a decent chance that you might have the opportunity to save someone's freaking life.

spencerfry 15y ago

Amit is a pal. One of the nicest guys you'll EVER meet. Period.

jeremymims 15y ago

I joined one of the drives a week ago in New York. Swabbing your cheek is easy, filling out the form is easy, and even though the odds are I'm not a match for Amit, I may one day be the match for someone else. From what I understand, the procedures for donation have gotten simpler and less invasive all the time. Giving up a day for the chance to save someone's life is an absolute no-brainer. Easiest decision I'll ever make. Go get on the list.

hugh3 15y ago

If South Asians are severely under-represented in the US bone marrow donor registry, can't we just buy bone marrow from donors in (say) India?

potatolicious 15y ago
There are numerous ethical issues surrounding the commercial/free-market trade of human organs. Most simply: - There is, naturally, demand for bone marrow transplants in India. What are the moral and ethical implications of denying someone there (of presumably lower economic ability) a transplant so they can supply someone in the US (of presumably much higher economic ability)? If they were swimming in an excess of willing donors, perhaps this would be less of an issue, but I don't know any country in the world where there is a surplus of bone marrow donors. - What incentive structure does this create, and what does it mean for us if we legitimize commercial organ trade? How many donations will be voluntary, or will we see an explosion in "donations", forced upon the disenfranchised and vulnerable? I'd be very wary of walking down the path of commercialized organ trade.
- edanm 15y ago
  Interestingly though, this isn't "organ" trade, because the resource in question is replenished by the body within a few weeks. So it isn't really depriving anyone of anything to donate bone marrow.

tibbon 15y ago

I just registered for a bone marrow match drive tomorrow at OSU. While I'm 100% sure I'm not a match for Amit, I hope that many people show up, and that I'm a match for someone.

mccooscoos 15y ago

I don't understand why blood, marrow, and organs have to be donated. I agree that the concept is discussing, but in a life and death situation people should be able to pay to "encourage" a donor. Already there are a lot of people who go to third world countries to buy organs. If it was legal to buy organs people wouldn't have to risk the unsanitary operation condition. Furthermore, seeing as giving blood or marrow is less dangerous there should be no reason not to allow people to buy them.

stuntgoat 15y ago

There have been some great results in the news recently regarding CAR T cells in the treatment of Chronic Lymphocytic Leukemia. I think this one might be a winner. http://news.ycombinator.com/item?id=2873604 http://news.ycombinator.com/item?id=2873604 http://penncancer.org/cart-19 http://penncancer.org/cart-19 From what I understand about this treatment, blood is removed from the patient and 'infected' with a harmless HIV virus that has been modified to attach a molecule to T cells. This molecule binds to a receptor (CD19) on the cancer cell, thereby creating T cells that attack the cancer cells. The treated blood is injected back to the patient and the patients body creates more of these cells on it's own- effectively creating an immune response to the cancer cells. Do you think a subset of HN readers could somehow facilitate a project that could help the labs researching ( or planning on researching ) methods for expanding this method of treating cancer? I would like to ( and inspire people here to ): 1) find the available labs that can best perform the _steps_ required for this treatment _process_. Basically, get a list of labs. 2) help expedite iterative methods for techniques that: a) speed the development time of the specific _step(s)_, and/or b) broaden the efficacy of the overall treatment _process_ ( ie. treat other cancers ). Basically, list the _steps_ in the _process_ and see if there is a way to make them faster, better. 3) create tools that allow the people and labs working on this _process_ to communicate as efficiently as possible. Basically, learn how the different labs work and write tools that streamline their collaborative workflow. I have a feeling there are many smart people on this site with free time ( ie. visiting this site often ), technical resources, and organizing skills that could make this happen- fast. Shoot me an email with questions/comments/complaints if you don't want to comment on this thread; I want to help.

jberryman 15y ago

I'm boring white western European, but signed up and should get my swab kit in 2 weeks. Maybe I can help someone else.

tonybgoode 15y ago

Not that it will matter to the trolls, but it's worth noting: The vast majority of championing for this cause is happening on behalf of Amit, not by Amit himself. He was actually quite reluctant to be public about his condition, and has only stepped forward at the encouragement of people close to him. While Amit is at the center of this effort, the narrative has quickly widened to address the much larger issue of underrepresented populations in the bone marrow database. The impact of the efforts inspired by Amit's situation will be felt far beyond that of one person. Even as he fights for his life undergoing intense chemotherapy and all kinds of difficulties most of us have no appreciation for, he continues to do the best he can to help people. Anyone who does that deserves not just our respect and admiration, but our attention and participation. If anyone feels like being self righteous, they might do well to channel that energy into doing something that helps the world instead of leaving insidious comments on a thread.

srik 15y ago

Why not go to a good private hospital somewhere in South India. Amit probably has a better chance of finding a matching donor there and the procedure, I'm assuming, is less expensive than over here.

rdl 15y ago

I know some other people on the list, and was looking at signing up, but got really annoyed that all the registries seem to demand a third party or multiple third party contact info in order to submit a sample.

extension 15y ago
They do this so that they have more ways to contact you if you are a match some day. Apparently not being able to contact matches, due to outdated contact info, is a big problem. Like, on the order of 50%. It's still annoying but at least it has a legit purpose.
- deleted 15y ago
  [deleted]

tdfx 15y ago

Call me paranoid, but can you use a slightly different name in the registry to keep the prying hands of the state off your voluntary DNA sample? Has there been any known cases of the police using this registry to obtain evidence for prosecutions?

param 15y ago

Sad! I am south asian and I just tried to register - they refused to sign me up as I have had hepatitis B in the past. In India, this is so common that people don't even know they have had it (I came to know about it 10 years after having it). I just remember having 'jaundice' once.

roshanr 15y ago
If you've had jaundice as a kid in India, it was probably hepatitis A, in which case you are allowed to join. Probably worth double checking.
- param 15y ago
  I came to know about it after 10 years because I went to a doctor in the US for some check up. Thanks for cross-checking though

abbasmehdi 15y ago

Just got the wife's permission and signed up, wish us luck.

paolomaffei 15y ago

Isn't this a bit selfish?

6841iam 15y ago

Once someone with AML gets a marrow what does their 1 year prognosis look like? I computed cancer "yield" a year ago based on cancer data from the state of New York, and Leukemia is (unfortunately) a pretty devastating cancer: http://d0j.blogspot.com/2010/05/cancer-incidence-and-state-of-new-york.html http://d0j.blogspot.com/2010/05/cancer-incidence-and-state-o...

ajtaylor 15y ago

I'm not in the US, and I'm a white Caucasian, so it won't be any help to Amit. But when the Australian Red Cross phoned me up this morning to set an appointment to donate blood I also told them I wanted to get registered as a bone marrow donor. Until yesterday, I had no idea they could now extract bone marrow cells via blood. Excellent timing on both the post and the phone call!