For those of us who have already been sampled and entered into the database several years ago but have moved around multiple times since, how can we update our contact info? I want to make sure I can be reached in the unlikely scenario that I am a match for someone.

For those of us who have already been sampled and entered into the database several years ago but have moved around multiple times since, how can we update our contact info?

If you've already registered, you can update your contact information with the National Marrow Donor Program online here.

Has anyone ordered the swab kit? My mom & I ordered one a few days ago, and never received them. I can't imagine the USPS takes so long? Just was wondering about the time and if we should re-order. No drives in the LA area.

louiecypher said:

how can we update our donor status?

Call (800) 654-1247 or click here.

Saira said:

No drives in the LA area.

Several upcoming drives are coming up in the LA area:

July 1 - Buena Park, Artesia
July 7 - Irvine
July 8 - Pasadena
July 12 - Los Angeles
July 20 - Santa Monica

Thank you A N N A & vinod for your tremendous support. A reminder that drives are happening nationwide for the next 10-12 days. Or, if you have a substantial brown network in your community & can organize a drive, we can help you set up. Vinod's right: every little swab counts. And time is of the essence.

And, if you're still not convinced, ask Obama.

Email indiaseema@hotmail.com for more info.

how long after registering does it take for my information to be entered into the donor database? (i registered at a donor center, but is there a difference in processing registrants at donor centers vs. drives vs. mail?)

I swabbed last weekend. It was a long way to the local drive, but meeting Vinay's uncle there and spending some time with the team that put it together was entirely worth it.

If ever our community of well-educated, well-informed "model citizens" needed to rally behind a cause, its around this. The number of south-asians in the US is small, and the chances of finding a match is tiny. Which is all the more reason for all of us to sign up.

i'm so sad... i know sameer.. we spent some time in india over 10 years ago... he started a thing at stanford called project dosti... gosh.. right now, i'm in shock..

to those out there.. please consider and think about becoming a committed donor...
there are precious lives out there that you can potentially save..

right now, i'm just overwhelmed with sadness.
(sigh)

Has anyone ever looked into India to look for a match? If its a sheer numbers game you'd think one might find a match much more readily there.

Has anyone ever looked into India to look for a match? If its a sheer numbers game you'd think one might find a match much more readily there.

Most people in India in Vinay's position have to use the database which is here. I don't think there is one over there.

Sameer Bhatia is not to be confused with Sabeer Bhatia.

Thanks SP. Irvine, Pasadena and Artesia are over an hour away, hence we don't consider them LA, but the SM must be a new addition, as I didn't see it when I last checked. Similarly, the los angeles venue is in downtown, which makes it an hour's drive, with our horrid traffic. So we ordered swab kits and no sigh of them today either.

chickpea -- yep, Sameer's an acquaintance of mine too. We also work in somewhat the same industry so we cross paths from time to time professionally as well.

So, I was blown away when I clicked into the "help a friend" email I received this morning and saw *his* name... and then *his* picture. I'm already registered BUT, when it hits this close to home, it really drives home the urgency.

...which reminds me.... there's another article I should post ;-)

Bone Marrow Transplants are routinely done in Tata Memorial & AIIMS. Registries ( donor database ) exist in both hospitals. Last week I emailed an oncologist working in India about these SM swab drives. His reply was that it seems your Indian-American friends want an Indian donor but at the same time want the procedure to be done in USA for sake of health-insurance etc. In that case nothing much can be done besides finding 20,000 donors right here in USA. But if you don't mind doing the procedure in India and paying for it, then you can certainly go to Tata Memorial & get a match far more easily than out here in USA.

Another thing I learnt from that email was that shared ethnic background gives maximum match possibility. Like if you are a Chettiyar and you have AML, you will find a match in your siblings, if not then in your relatives, if not then in the large Chettiar community, if not then rest of India & so on. So if say a South Indian from India married a Caucasian from Australia and then they had a kid and the kid had AML, chances of match are remote because the kid belongs to a mixed ethnic background whose members are comparitively few.

Tambram (and anyone else who is wondering):

I took my information from Vinay's site.

Some of the other facts that might come handy while persuade people

When a Caucasian is looking for a match they find 15 matches on an average where as opposed to an Indian they might find one match or none.

This can happen to anyone at any age and god forbid if you get into similar situation then this will be the only registry that will come to rescue.

There is no such registry in India and when an Indian kid is looking for a marrow match this registry is the only resort. [helpvinay.org]

As for the rest of your comment, specifically the stuff regarding likelihood of matching...I've personally tried to persuade even more of my Tamil/South Indian friends, because I read the same thing somewhere.

Is there a reason why people aren't allowed to pay for marrow donations? Unlike organ donations, which are public, marrow can be replenished. However, unlike blood, there is some risk for the donor, so a free system might have problems.

Anna, last week when you posted it, since I am not a doctor, I too thought the guy really had only 18 days to live & that there were no registry in India etc. So I contacted my relatives in India who put me in touch with this oncologist in Tata Memorial & I emailed him. He read website & said 18 days probably refers to something else. He also said the procedure was done routinely in India & rest of facts stated in my previous post.

Regarding the second part about matching -in these days of globalization, you can find worse cases quite easily - Say a South Indian marries a Caucasian & their kid marries a Chinese & then they have a kid, that final kid is some exotic mix of SouthIndian+Caucasian+Chinese. It will be next to impossible to find a match for that kid if he gets AML because his ethnic group probably has maybe half a dozen people on entire planet.

Say a South Indian marries a Caucasian & their kid marries a Chinese & then they have a kid, that final kid is some exotic mix of SouthIndian+Caucasian+Chinese. It will be next to impossible to find a match for that kid if he gets AML because his ethnic group probably has maybe half a dozen people on entire pla

you're exaggerating a bit, but yes, this is an issue. people of thai-european ancestry in the USA who need matches will go to thailand specifically because that combination is more common there (lots of white male expats + thai women). in any case, by the time people who are so genetically mixed appear on the scene in large numbers

1) there will be more of them

2) we will (hopefully) be able to grow organs (fingers crossed)

also, the number of HLA loci are finite, you get your alleles from half of your parents. the immune profile isn't a mixture, it is a discrete slice of both parents. this means that the increase is diversity isn't as great as you assume assuming a blending analogy. specifically, the number of genetic loci is small enough that sampling variance is going to make someone deviated from the perfect storm of being 1/4 chettier, 1/4 chinese, 1/4 white and 1/4 african.

in any case, let's remember the effect of numbers. even if the chance of not matching is 99.995% as you increase the sample space into thousands the expectation of a match within that space increases toward 100%.

p.s. as someone who will have biracial children i would like to emphasize the upside of being genetically rare: likely immunity to common pathogenics, and/or survival in case of a super-plague. the way evolution works microbes develop strategies to overcome common immune profiles. if yours is rare, then you will almost certainly not be as susceptible.

survival in case of a super-plague

make sure he's a fan of indian tea, everything else is gravy

The baby might survive avian flu 5.0, but he might also equate himself to paneer dosa. Or worse, eat it. And that's no good.

Sameer is a friend of mine and I urge all of you to go out there and please get registered if you haven't.

My cousin recently ordered her kit through the mail and said it was incredibly easy and cheap (free)...not to mention convenient.

how long after registering does it take for my information to be entered into the donor database?

I asked this question at the donor drive I went to (which was for Vinay). One of the volunteers, who works for a blood bank, said that normally, it takes 4-6 weeks for a donor's information to be entered into the database. However, when the samples are collected at a drive organized on behalf of a patient with little time to find a match, they expedite the processing of the sample so that it can be entered in as little as a few days. Don't know if she was just saying this to make me feel better for registering on behalf of Vinay (whose website now says 11 days left), but I'll take it on faith.

i know both sameer and his wife reena.

sameer is a wonderful human... always helpful and kind and considerate. it's rare to see some our age instinctively put other people before himself. please, it's time to help him as much as he's helped others!

and reena is the funniest and sweetest person i know. i've never spent a day with her and not laughed until i cried. i don't want to image her ever not smiling or laughing!

please spread the word and help them.

notammpnstrr/notamonster:

How about you live up to your handle by not leaving such inappropriate comments? You are disgusting.

I just gave my swab....but I am surprised how there is no bone marrow database in India...With a population like we have back home, it would be so much more easier to find a match.... who can we work with to make this happen?