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
Photojojo, Jelly founder needs bone marrow match to save his life
51–60 of 78 posts
Re: Photojojo, Jelly founder needs bone marrow match to save his life
#52Earlier quoted context omitted.
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...
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!
Re: Photojojo, Jelly founder needs bone marrow match to save his life
#53Earlier quoted context omitted.
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
Re: Photojojo, Jelly founder needs bone marrow match to save his life
#54Appeals 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…
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.
Re: Photojojo, Jelly founder needs bone marrow match to save his life
#55Canadians 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...
Re: Photojojo, Jelly founder needs bone marrow match to save his life
#56I 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.
Re: Photojojo, Jelly founder needs bone marrow match to save his life
#57Appeals 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…
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.
Re: Photojojo, Jelly founder needs bone marrow match to save his life
#58Question: 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.
Re: Photojojo, Jelly founder needs bone marrow match to save his life
#59Here'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 wai…
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 sav…
On the other hand, the incentive to sign up would probably improve.
Re: Photojojo, Jelly founder needs bone marrow match to save his life
#60Question: What about risks to the donor? Does this stuff regenerate? Are the risks basically same as getting a bit of tissue harvested?
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.