
Photojojo, Jelly founder needs bone marrow match to save his life - ck2
http://tumblr.amitgupta.com/post/11102689089/two-weeks-ago-i-got-a-call-from-my-doctor-who-id
======
jeremymims
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.

------
cptskippy
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.

~~~
madrobby
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...](http://happymonster.co/2011/10/06/lets-help-amit-gupta-defeat-
leukemia/)

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.

~~~
cptskippy
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.

------
davidu
Fuck Cancer.

    
    
      ^
      |
      |
      |
      |

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

~~~
ck2
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...](http://www.cancer.org/Cancer/CancerBasics/lifetime-probability-
of-developing-or-dying-from-cancer)

~~~
smackfu
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.

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

------
mikeryan
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>

~~~
aristus
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.

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r4vik
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]

~~~
tibbon
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.

~~~
nquinlan
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.

~~~
r4vik
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

------
alexknowshtml
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.

------
cbs
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.

------
xutopia
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).

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

------
deepGem
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

------
vgoel
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>

------
athom
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...](http://www.marrow.org/Registry_Members/Donation/Donation_FAQs.aspx#pbsc_process)

------
joshklein
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.

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

~~~
prakashk
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.

~~~
dlikhten
Thanks, I just may consider signing up then.

------
SqMafia
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.

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

~~~
andrewpi
Which likely violates the National Organ Transplant Act of 1984.

------
mhb
What is the bone marrow donation process like?

[http://www.marrow.org/Registry_Members/Donation/Donation_FAQ...](http://www.marrow.org/Registry_Members/Donation/Donation_FAQs.aspx#process)

------
97s
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.

------
xutopia
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...](http://blood.ca/CentreApps/Internet/UW_V502_MainEngine.nsf/page/onematch?OpenDocument&CloseMenu)

------
laktek
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.

------
stevejalim
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/>

------
vladsanchez
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

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

~~~
akuchling
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.

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

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

------
danvideo
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!

------
ericabiz
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.

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

------
mahyarm
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.

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

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

------
pitdesi
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/>

~~~
juiceandjuice
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.

------
diolpah
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.

~~~
ck2
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).

~~~
sliverstorm
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!

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

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

