Photojojo, Jelly founder needs bone marrow match to save his life | Hacker News Reader

Photojojo, Jelly founder needs bone marrow match to save his life

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Amit Gupta is a big reason I moved to New York City and one of the reasons I wanted to be a startup founder. He is talented, giving, and above all, kind to everyone around him.

Most people don't realize that the startup scene in New York City today really started at House 2.0, his apartment in the Garment District. It's where many future founders came to interact, share ideas, and get out of their own homes (and heads). Many many positive people and contributions to the New York Tech scene came out of his initial generosity. Even though he lives in San Francisco now, the New York startup scene wouldn't have been so strong without his initial contributions (including BarCamp).

I e-mailed Amit out of the blue in early 2006 to ask him if I could attend the next Jelly meetup. His response helped change my life:

Hey Jeremy,

Glad to have you aboard! I'll add you to the list.

Be well, Amit

He is the best kind of entrepreneur and one hell of a human being. I humbly ask that we as a community do all that we can to help him.

Appeals like this always bother me. You can weed out incompatible donors by simply comparing blood types and yet no one ever posts compatible blood types or even their blood type. This seems like such a simple thing to do to increase your chances of finding a compatible donor.

There's always a limited number of free tests available but how many are wasted* on people with the wrong blood type? The tests are expensive and if someone knows up front they're not compatible but can afford to pay for a test, they might instead donate funds instead to purchase free tests for those that might be compatible but otherwise couldn't afford to get tested.

Here is who can donate to whom with regards to marrow transplants:

    Type A can donate to types A and AB.

    Type B can donate to types B and AB.

    Type AB can donate to type AB.

    Type O can donate to types A, B, AB, and O.

*I know that tests aren't wasted because the people are entered into a DB that benefits all marrow transplant recipients but the individual appealing to others for help could improve their odds.

I along with other folks have donated nearly $2000 in order to help pay for tests as part of Tony's NYC swab party http://happymonster.co/2011/10/06/lets-help-amit-gupta-defea...

That said, lots of people don't even know their blood types and that shouldn't be used as a barrier when the DB does need more ethnic diversity, period.

I understand the need for diversity in the database and you can argue that not filtering by blood type would expand the diversity, these appeals almost always ask for people of a particular race or heredity which limits diversity and seems to conflict with that notion of increasing diversity.

A compatible donor has to have a compatible blood type and matching leukocyte antigens. The later is expensive to test for but race can be used to exclude a large segment of incompatible donors. Blood type is harder to check obviously but compared to leukocyte antigen compatibility test it's cheap an easy. We're talking less than $10 vs $100+ for a leukocyte antigen test.

These are personal appeals and the two factors that can be used to cheaply and quickly narrow the field of potential donors the most are race and blood type compatibility.

Is that the only thing they're looking for when they say they need a match? Just blood type? Or is that just one of the larger factors?

Compatible donors need to have both a compatible blood type and the same leukocyte antigens. The later is usually dictated by your heredity and can only be determined by an expensive test. Race is the biggest qualifier that can be used to exclude segments of the population, blood type would be the second largest qualifier but they seem to skip this step and go straight for the expensive tests.

Fuck Cancer.

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[Edit: Anyone who has gone through it, or has had loved ones deal with it knows what I'm talking about.]

I've had loved ones go through it. This sentiment sums it up perfectly.

It's also important to realize there are dozens of different kinds of cancer even though they all share the same word.

What freaks me out is women have a 1 in 3 chance of getting cancer and men 1 in 2 :

http://www.cancer.org/Cancer/CancerBasics/lifetime-probabili...

Yes, this freaks me out too, and makes the vast majority of humans insane for not taking care of their health... all the more reason to be vigilant, not complacent.

People eventually die. If they don't die of cancer, they die of heart disease, or liver failure, or some other part of their body wearing out. So those stats don't freak me out... the relevant ones are how many people under 75 or so get a disease.

Heart disease is much easier to avoid through diet and exercise. Cancer not so much!

I'm a survivor of acute lymphoblastic leukemia and I really hope Amir, and everyone else who's got to put up with it, will join the club.

Just a note, even if you're not South Asian and able to help Amit, thousands of people are diagnosed with Leukemia and other diseases which may require a marrow transplant. Take the test he linked to, it may help save a life.

http://www.marrow.org/Join/Join_Now/Join_Now.aspx

Just a regular white guy, but I joined -- thanks for the info.

Even better, go donate blood and sign up for the marrow program there. Whole blood is always in demand.

I donated marrow a few months ago. I had been on the list for fourteen, fifteen years before I came up as a match. Can't say it was a lot of fun. But it was worth it.

I tried to sign up but it disallows me from doing so as I'm not in the USA. which does make sense from an admin/legal perspective.

However, if he needs South Asian bone marrow, isn't the best place to look South Asia?

Is there an ethnic minority international bone marrow donor system anywhere?

Maybe we should build one? [edit] http://www.wired.com/medtech/genetics/news/2007/03/MATCHPIA looks like someone came to a similar conclusion [/edit]

I do like the idea of building one, or making a format that the national registries can exchange information easily in.

I have to wonder if there's all sorts of privacy/medical/HIPPA stuff that stops/slows this.

I don't know much about HIPAA and medical privacy, but I do know it only aplies in the US, and (I think) you can sign your way out of it. However, that said there would still be a bunch of concerns, involving who has access to what.

I mean just get them to sign it away with a disclaimer that says 'i release this data under a creative commons licence' and host it somewhere that HIPAA doesn't apply

I'm the founder of one of the leading coworking spaces in the world, and our space and community wouldn't exist if it weren't for Amit Gupta's "Jelly" http://workatjelly.com

Amit's brilliant, kind, and as others have said here is one of my favorite humans on this planet.

It was a very, very strange day where in 24 hours:

1) I got a call about being a bone marrow match for a 30 year old man with leukemia 2) Steve Jobs passed from cancer 3) A dear friend's battle with cancer went crazy-public as he searches for help with this match.

I have great confidence that with the amount of good that Amit has put into the world, he stands a chance of finding a match. I'm very happy to see the internet rallying behind him.

Even if you're not Asian, still use this as reason to join the marrow registry. The registry needs as many people as it can get, and it is just as important for the sick who won't ever get this much attention.

If you live in Canada you can learn about how to donate here: http://www.blood.ca/ (despite the name it's not just about giving blood).

Thanks! Amit is a pal and I live north of the 49th parallel. Will be joining the Canadian marrow registry shortly.

For all those based out of India - here's the contact for Bone Marrow donations. I called their number but no one's picking (probably because it's a Saturday). I'll call again on Monday. Perhaps someone from Amit's family/friends can contact the center and see if they have a matching bone marrow readily available. Here's the contact.

Dept. of Transplant Immunology and Immunogenetics All India Institute of Medical Science Ansari Nagar 110029 New Delhi India Email: narin98@hotmail.com Telephone: +91-11-265-88-588

Please contact http://www.aadp.org/ Specifically: Nitu Binnarh Outreach Coordinator (South Asian Community) Nitu@aadp.org 510-568-3700 ext. 100

Also watch: http://www.youtube.com/watch?v=qost8BSnJr0

Talk about timing! Our class just got a presentation and tour of Michigan Blood in Grand Rapids Thursday, including a presentation on the Marrow Registry. One thing y'all might be interested to know: most requested donations now are not marrow donations, but peripheral blood stem cell (PBSC) donations. If I recall correctly, marrow donations account for only one in five requests, these days.

PBSC donation is through a non-surgical procedure known as apheresis. It's essentially a blood donation, except that blood components not required for a procedure are actually returned to the patient.

In this case, the desired component is blood stem cells. These aren't normally found in peripheral blood (which is any blood outside the bone marrow), so a series of injections are required for five days prior to donation to coax more out. Then, the donor's blood is removed and passed through a machine that extracts the stem cells and returns the rest of the blood to the donor, typically through a second needle in the other arm.

It's a time-consuming process; about four hours, according to our guide. Donors may also experience headaches, or bone or muscle aches for several days prior to donations, side effects related to the movement of more stem cells from the marrow to the peripheral blood. On the up side, it doesn't require penetration of the pelvic bone, as a marrow transplant does. It is a bit more complicated than a regular blood donation, and the need for a needle in each arm is certainly inconvenient. Some apheresis machines are now able to perform the withdrawl and return process through a single needle, but I'm not sure if this method has been adapted for PBSC donation yet.

Anyone interested in learning more might like to check out the National Marrow Donor Program at http://www.marrow.org/Home.aspx. The donations FAQ is especially informative: http://www.marrow.org/Registry_Members/Donation/Donation_FAQ...

I met Amit once at an NYC co-working Jelly event. Miraculously, he identified me from my Twitter picture and blog, and immediately talked to me like I was an old friend. So that's how I'm going to describe him when I ask my friends to get tested for compatibility.

Question: What about risks to the donor? Does this stuff regenerate? Are the risks basically same as getting a bit of tissue harvested?

Way more invasive than harvesting tissue, so the risks are going to be greater.

Marrow does regenerate. (otherwise your small donation couldn't possibly fill the reciever's bones!) Supposedly will take a month or so for the donor.

From DONOR FAQ (http://www.samarinfo.org/donorfaq.asp) by South Asian Marrow Association of Recruiters:

Marrow donation: Marrow is removed from the bones on one or both sides of the upper hip area using a special syringe. The procedure is performed by an approved collection center, usually under general anesthesia. The entire donation process lasts about one hour. The donor usually spends a night in the hospital for observation. Approximately 3-5% of your marrow is extracted with a syringe and needle. The body naturally replenishes the donated marrow in a couple of weeks.

See other questions/answers on the same page for more info.

Thanks, I just may consider signing up then.

The number of Asians (East and South) registered with the registry is quite low in the US. When it comes to bone marrow matches, race/ethnicity actually matters a lot.

Please consider registering with the registry ( http://marrow.org/Join/Join_the_Registry.aspx ), especially if you're of Asian descent. It could be the easiest way for you to save a life.

Leukemia is the leading form of cancer among young people. It's heart breaking to see young people succumb to it because of all the unrealized potential lost.

Seth Godin just offered $10,000 to a match (or the charity of their choice).

Which likely violates the National Organ Transplant Act of 1984.

What is the bone marrow donation process like?

http://www.marrow.org/Registry_Members/Donation/Donation_FAQ...

Best of luck to you. I have been fighting off AML for the last 4 years. Keep a positive attitude through all your testing and chemo. You have a long road ahead and always laughing and making jokes will be your best friend.

EDIT:: Also people are right, everyone should join the marrow list. bethematch.org. You just swap your mouth and send it back. You might not ever be called, but one day you might save someones life.

Canadians can give through blood.ca (the list is international so if you are compatible it'll help Amit).

http://blood.ca/CentreApps/Internet/UW_V502_MainEngine.nsf/p...

Amit is a great guy and was always willing help other startups. Three years back, when we first launched CurdBee we were mailing all sorts people in the industry to get the attention. Amit was one of the few people provide feedback to us.

Tangental, but still related - if you're in the UK, please do think about registering to be a donor. I'm signed up with the Anthony Nolan Trust: http://www.anthonynolan.org/

I'm a member of BeTheMatch.org and I'm willing to help save a life donating my bone marrow. Spread the word! Better yet, join them! Amit if you read this, contact them, they'll help you find a match. =D

"Stay Hungry! Stay Foolish!" -Steve Jobs

How about people based in the sub-continent. Do you necessarily have to be based out of US or Canada to donate.

looks that way

Yeah..we are from South Asia and willing to help him out.

Maybe if it comes down to the wire they can get fedex or something like that to help - I dunno.

It's all very sad that it's so disorganized worldwide and need this kind of supreme independent effort.

Why isn't there international government funding for this?

A friend-of-a-friend ran a similar campaign for her brother, and she assembled a long list of registries: http://www.healemru.com/registries.php

I think the national registries share data, so a match in a non-US country should be reported.

Thank you. I found the Indian address and called them but no one's picking up the phone. I'll try again on Monday.

I sent this around to a few private mailing lists of friends who surely know Amit or at least a friend of his.

I know a baby girl who received a transplant last week as a result of a match - after MONTHS of searching, thankfully.

Of course I'm sorry to see this story, but definitely important to publicize these drives for donors. Even if you're not of South Asian descent it's a good idea to get on the registry!

Damn. I really hoped I could help. Unfortunately, those with autoimmune diseases can't donate bone marrow.

I do sincerely appreciate this being brought to light here, however. This post can literally save thousands of lives...if we take action.

All the best to Amit. My thoughts and prayers are with him.

I know Amit and will echo everyone else that knows him: he is awesome, please help if you can

If this donation drive doesn't work I would seriously consider flying to India and getting a donor from there, paying money. A bone marrow transplant doesn't have the "moral hazards" that an organ transplants can have.

I live in India. Is there a way I can help? I looked at BeTheMatch, they do not have a collection center here.

Thanks for the link to the site. Tweeted it to those who may be able to help. Cross our fingers...

I don't know Amit personally but have interacted with him a bunch because he's a customer, and he is a really awesome guy.

If you are in Chicago and South Asian, I'm hosting an event next Thursday where we'll be doing cheek swabs: http://www.facebook.com/event.php?eid=160586174028348

If in New York, there is an event next Friday: http://brownbones.eventbrite.com/

I know Amit very well. My best friend/roommate is a dev for PJJ (pictured on the blog). Amit is one of the nicest people I know. This is such a bummer.

Here's an unpopular thought, but one that may not be on the list of "things too taboo to think about" for HN readers.

What if marrow donation was a for-profit industry, or at the very least a nonprofit or government-run industry that allowed people to sell their marrow at market prices? Would Amit and thousands of others in his position be resorting to begging for access to life-saving treatments, or being put on waiting lists that are far too long relative to their prognosis?

My guess is no, with the exception of people too poor to afford access to such materials - which are already so cost prohibitive that this is already a problem. I've never understood why the notion of making a market in organs and other medical materials is such taboo.

How about people can sell it and the gov't has to pay for it when someone needs it? Seems a lot less distopian that way.

This may be the very first legitimate use of tax dollars I've ever heard of.

Well, I think the question of "who pays for it", while important, is orthogonal to this particular issue, which is about increasing the available supply.

If a poor but healthy south asian immigrant wants startup capital to open a restaurant, and Amit wants a long and fruitful life, a legal market that allowed such a transaction would dramatically increase the supply of available materials. And it may even be possible that this increased supply would drive the end cost of living tissue down.

Now to be clear, I don't want to detract from Amit's immediate issue - this thread should be about helping him, not lead off a discussion that has nothing do to with his immediate problem( nobody here is going to change the legal framework within a month ). But I would like to at least understand the downsides to allowing markets in living tissue.

Well, I think the question of "who pays for it", while important, is orthogonal to this particular issue

I would say it's at the heart of the issue. Presumably, the rationale for disallowing a body parts market is that, while there might be more supply overall, there would be less available to the poor, because they would be competing with the rich. If the cost is socialized then that issue goes away.

I don't see people holding out for that much more money than the surgery costs, and given the alternatives available to insurance companies I don't see why they wouldn't pay for the organ. Keeping someone alive on dialasis, say, is really very expensive.

It's a slippery slope.

If it was for-profit, countries like China would be pulping political prisoners for it.

Actually maybe not just China, I am sure some states in the US would make it mandatory for prisoners to donate to pay for their own prison sentences and maybe judges would take a cut too, increasing their willingness to find people guilty (judges are already allowed to own stock in privately run prisons).

If that was the case, wouldn't prisons already force inmates to sell their plasma/sperm? I'm pretty sure that would get struck down in a court.

I'm, pretty sure that inmate sperm would be in pretty low demand :P

This won't make those scenarios any more likely. Its perfectly legal to sell organs already, as long as they aren't _your_ organs, but rather organs someone else donated.

At least in the US, look on the bright side- the odds of anyone needing your marrow are low, so there would be no sense in a systematic harvesting of marrow prison-wide every month. Inmates already work in labor gangs. So, if you are a prisoner and you get selected, strike a deal and get out of labor gangs for a month (because you just earned as much as if you had been in a labor gang). It'd be a good thing to get picked!

Maybe. Bone marrow donation is debilitating and really painful. I suspect not everybody would want to duck out on labor gang for it.

Painful? At least in Europe this is done under general anesthetic and after the procedure you shouldn't feel more than light pains.

One thing to know that is somewhat unique to bone marrow transplants, is that you need a lot of people registered in order to find anyone who will match. It's not like you can go pay someone for their bone marrow and be done with it, you need to find that one person amongst millions.

That changes the incentives a lot. When you register, some day you may get a call that you are the one person in the world that can save someone's life.

[I had a bone marrow transplant from a stranger 15 years ago]

On the other hand, the incentive to sign up would probably improve.

The economics of bone marrow are different, because finding the match is the hard part. The strange thing is that they often charge the person _registering_ their bone marrow: http://marrow.org/Join/FAQs_about_Joining.aspx#cost This is just insane - how many people would donate blood if they were expected to pay or were hit up for cash donations? (And why does it cost $100 when 23 and Me's DNA analysis is $99? (Is bone marrow typing a DNA test, or something else?))

To be clear, I recommend registering your marrow. I've registered mine (and am disappointed that nobody has needed it yet). You can do it without being required to pay: http://marrow.org/Join/Join_Now/Join_Now.aspx

Organ transplant is a for-profit industry in India. Blood, bone marrow, kidneys; everything is bought and sold. There are no waiting lists, doctors sell it to the highest bidder.

Indian doctors engage in organs trading, nice doctors would hook you up with a poor and offer to buy his organs. Evil ones will abduct poor laborers, take out both of their kidneys & other organs, and dump their dead body.

There have been thousands of criminal instances of such horrific incidents and millions of organs traded illegally.

You can read some stories at following links:

http://www.washingtonpost.com/wp-dyn/content/article/2008/01...

http://www.time.com/time/world/article/0,8599,1709006,00.htm...

http://articles.timesofindia.indiatimes.com/2003-02-02/india...

http://www.indianexpress.com/oldStory/16890/

> There are no waiting lists, doctors sell it to the highest bidder.

I think that translates into: the waiting list is invisible, it contains everybody that is poor.

This is reminiscent of the quote by Douglas Adams: "no one was really poor, at least no one worth speaking of.".

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