As Amardeep mentioned, the bunker is exceptionally quiet these days, because a few of us are consumed with our day jobs (as opposed to this, our beloved virtual one). For me, holidays like the one we just had are difficult to enjoy, because it zimbly means I’m going to be forced to squeeze five days worth of work in to four. No, I’m not bitter at all, despite how that read. 🙂 I’m swamped, but I’m not salty. Do you know why? Perspective.
I am constantly reminded of how I am one lucky person; other people have real problems, challenges which threaten their very lives.
Many of you remember Vinay, who needed a marrow donor, whose friends and family coordinated an extraordinary operation which found him (and a few others!) matches, even though his wasn’t “perfect”. SM constantly posted about the drives which were happening everywhere, and so many of you stepped up to give a little bit of yourself, for someone who could have been your little brother, your best friend, your cousin.
Well, we need your help again.
Another young person is fighting for his life, and despite the outstanding increase in South Asian donors in the national database thanks to Team Vinay, there is no match for him…yet. His name is Bevin and in the picture above-left, he is (of all things) wearing a “Gimme ur spit/get registered” tee-shirt in honor of Vinay. You see, as someone who was in remission, he took Vinay’s cause to heart and felt it was his obligation to do all he could to help spread the word, donate funds, convince people to get swabbed, since he knew first-hand what Vinay was up against.
Scrap the past tense; now, he is facing the same adversary Vinay is. Bevin needs our help and he needs it soon. But I’m not going to lose hope; if there was one thing I learned from Team Vinay, it was that negativity should be banished. Let’s focus on what’s good: Bevin’s friends are holding drives in New York City, within the next few days. Info on that below, the link to Bevin’s facebook group is here.
I’m sorry this post is so rushed, but I wanted to publish it ASAP, because the first drive is tomorrow. GO. PLEASE. HELP.
SWAB FOR BEVIN
All it takes is 12 seconds and you might be a match for Bevin…..
Please join us this Thursday at Bar 13 and/or Saturday at Katwalk for a Bone Marrow Drive for our dear friend Bevin Varughese. Below are the details of the events.
Date: Thursday, October 11th, 2007
Time: 6:30-9:30pm
Location: Bar 13
35 E 13th Street (Corner of University Place)
New York, NY 10003
——————————————————–
Date: Saturday, October 13, 2007
Time: 6:00pm-9:00pm
Location: Katwalk
2 West 35th Street (Btwn 5th & 6th Ave)
New York. NY 10001
For further Information please contact: Swab4Bevin@gmail.com
I’ll try to rewrite/update this post later…but for now, fire up your iPhone/Palm/Outlook/GoogleCalendar/Dayrunner/FranklinCoveyWhatever…if you are in NYC and you have not registered with the NMDP yet, you my friend, have plans tomorrow. If you are not in NYC, I know you’re related to, the ex- of or friends with someone who is– persuade THEM to get swabbed, if they are willing to be a committed donor.
I grew up with Bevin in the same community and I cannot tell you how much heart and strength he has in the face of all this adversity. For anyone who is not registered, it’s such a simple procedure and takes so little time!! If you are in the NYC area either Thurs or Sat. please come out and help support! Multiple drives are being set up across the country.
Thank you to the lovely Anna, who in her usual rockstar fashion, had the compassion and heart to post this story even though she is under a deadline for work! You ROCK!
Where should we go to find out where other drives will be held across the country?
Any place to register here in Toronto???
Thank you all so much for your support. The response and support has truly been amazing. We are in the process of setting many, many drives all over. Most of these are currently within the US. We are working to find out the proper process to setting some up in Canada. If you have any information on how to setup drives in Canada please email us. Also if your interested in setting up a drive for Bevin in your local area, please do email us, Swab4Bevin@gmail.com. We will supply all items necessary (marketing material, training, clipboards, reading material, swab packets, etc.) to have a drive setup near you.
We are very appreciative of all your efforts and support. We will find Bevin a match!!
Link to the National Marrow registry. They usually list on-going drives.
when i saw the name bevin, i thought maybe there are a lot of them from the ny area, but sadly it was the same person i was thinking of. i don’t even know him personally, but i’ve known of him since high school. this is just awful. but i am glad bevin has such a supportive team, just like bevin – the proper donor cannot be far behind!
What are you commiting to by being swabbed and registering? Thanks.
at this stage, you’re only joining the registry. here’s some info from the national marrow donor program:
When you join the NMDP Registry, you make a commitment to: Be listed on the Registry until your 61st birthday, unless you ask to be removed. Consider donating to any searching patient who matches your tissue type. Keep us updated if your address changes, you have significant health changes or you ever change your mind about being a donor. Respond quickly if you are contacted as a potential match for a patient.
You have the right to change your mind about being a donor at any time. Donating is always voluntary.
If you decide you do not want to donate, let us know right away. That way we can continue the search for another donor without dangerous — even life-threatening — delays for the patient.
All right! It took too many posts but I’ll be signed up and swabbed by next Thurs.
I wasn’t sure I met requirements* so I finally called in.
Hoping for a match! Break Bevin out of the medical system–or at least give him some extended-leave!
Cheers!
(* I’m quite active/healthy but have a mixed medical history from teenage years. hack HMO, steroid-induced osteoporosis, etc)
I believe there is a special place in hell for those who troll on threads like this. Anyone else feel like getting banned?
does donating marrow hurt a lot? are there any potential negative consequences for the guy doing the donating? does it require recovery time?
I am providing a link to the National Marrow Donor Program page that describes the donor process and addresses all your questions/concerns about donating marrow.
As far as I’ve read and been told, being a donor is a minimally uncomfortable process, and the fact that you’re helping to save a life far outweighs any slight pain/discomfort in my mind! That being said, it’s great that these questions are being asked because being a possible donor is something that each person should carefully think about and research before committing to it. It would be horrible to all parties involved if a match was found but then was person was unable to donate due to a lack of information about the procedure(s), steps involved.
Puli, information here.
And to add to the questions… if you’ve already registered with SAMAR at one of the recent Vinay drives, is it redundant to register at this drive? Is SAMAR affiliated with NMDP, or pass its donor info onto NMDP? Thanks!
“As far as I’ve read and been told, being a donor is a minimally uncomfortable process, and the fact that you’re helping to save a life far outweighs any slight pain/discomfort in my mind!”
Actually, from knowing a past donor, there is a certainty of pain, while the range differs from donor to donor. The process of extracting marrow (under general or regional anesthesia) may be “minimally uncomfortable,” but the medication given to coax blood cells out of the marrow is what leads to potential bone pain.
More from the Mayo Clinic: http://mayoclinic.com/health/bone-marrow/CA00047 <- this refers to the newer, stem-cell process. Does anyone know which process they’re using for donors in this drive?
Barnard/Bogota, excellent question. SAMAR is an Official Recruitment Group Member of the NMDP. If you registered at a drive for Vinay, you’re in the database.
Also, please stick to one handle per thread, thanks.
According to SAMAR, drives are being held in NY, MA, TX, CA, MI and DC within the next five days.
But when these drives are organized in the name of a certain person, what I understood was that any bone marrow information received would first be compared against named person- a sort of “preferential matching.”
So even if people have already registered at a SAMAR drive, is there some way to contact SAMAR or NMDP about placing your own bone marrow information towards Bevin’s “preferential matching” drive?
If you’re already registered, I would think that they have already compared you…and determined that Bevin still needs a match. SAMAR’s information isn’t separate from NMDP; they just help by targeting our community, since we are so woefully underrepresented in the db.
Anyone have more concrete info?
First thank you all for your support. It is again simply amazing. I got answers to some of your questions directly from SAMAR. If you have any more questions please email us @ swab4Bevin@gmail.com, or post them on this blog (Thanks ANNA!!) or contact SAMARinfo.org.
South Asian Marrow Association of Recruiters (SAMAR) is a non profit community based organization in the network of the National Marrow Donor Program (NMDP). We are committed to registering South Asians and other minorities in the national registry so that every patient in need of cellular transplant(i.e. marrow/blood stem cells)for leukemia and other fatal disorders finds a matched donor to improve health and find a cure. We have tried to answer some of your questions and concerns in the following paras.
2.pb: Drives are posted on samarinfo.org and swab4bevin.org
3 bp: We have funding for testing in the US only. for Toronto please contact the Canadian Blood Services.
6 bp: You are right ! there is a donor somewhere and therefore all committed people should register.
There is no legal obligation, but please make a moral committment to saving a life. There are 2 ways of donating cell, one by a marrow transplant and the other through your arm by apheresis. details on http://www.nmdp.org
8.bp: Please update any change of information on http://www.marrow.org
11.bp: The marrow is removed from your hip area with a needle and syringe and is done under anesthesia, so you will not feel the pain. Later you will feel some soreness. There are minimul risks as in everything we do, 24,000 have donated to save lives. Recovery time depends on you, usually my donors have recovered in a day or two see bp12 well written
Hey, be sure to tell us how today’s drive goes…I know it starts soon. 🙂 I’m crossing fingers, toes and myself in the hopes that so many people show up, you run out of swabs (I saw that happen at a drive for Vinay!). 🙂
If you take pictures, I’d love to put them in the SM Facebook group/album/on flickr etc.
“SM constantly posted about the drives which were happening everywhere”
not exactly…
Just this August, we organized a bone marrow drive and contacted SM about advertising the event. Nothing was posted; while we don’t expect that every south asian bone marrow drive be individually advertised, it was the only South Asian Bone Marrow Drive, co-sponsored by SAMAR, that was organized in Queens, New York. Moreover, we specifically contacted SM about advertising the event and did not even receive a response to our request. While drives to help Bevin are currently being set up locally, the drives that have passed could have also benefited him NOW. The crisis for matching South Asians to the National Bone Marrow Registry exists even when we can’t attach a friend or a face to the cause. I guess it’s understandable that it may take a personal connection to inspire awareness and to motivate action, but especially because the need for a match is urgent and time-sensitive, I find that fact of life frustrating.
I wish Bevin the best in finding a match and for a speedy recovery. p.s. before I am accused of trolling, I have commented on SM before and under a handle, but I’ll use my real name and email address for this comment
Getting swabbed is very easy. Painless. Fast. Of course it’s not going to be pleasant going through the procedure to donate, BUT it would be a privelege to help save someone’s life.
Rena, since I was writing the majority of “marrow” posts, I apologize.
We do the best we can, with limited time and resources but unlimited good intentions.
If I didn’t put up a post, it’s because I couldn’t. I give this site all I can spare– yesterday, I rushed through this post in the middle of a very stressful day, because the drive was tonight. Spending 30 minutes on this meant I had to cancel something else. If I didn’t put up a post for the Queens event, then I promise you, it wasn’t out of anything malicious. If I could have, I would have, and I wish that truth was good enough.
We’ve had less posts this summer since we are on hiatus, and I’m sorry that this fact impacted a cause we sincerely care about. I get close to one-hundred emails a day. It’s true,I don’t respond to all of them because it’s just not possible.
I agree, the crisis exists even when a friend or family member isn’t immediately affected; that’s why I wrote whatever I did. I don’t know Bevin personally, and I’ve never met Vinay, lest anyone think I’m doing favors for my friends. And since we’re being brutally honest here, I find your comment frustrating, because
a) it makes it seem as if we write such posts because of nepotism…ouch 🙁
b) for the umpteenth time, we do the best we can.
Seriously, y’all. We do.
“Also, please stick to one handle per thread, thanks.”
Funny, shouldn’t moderators stick to that rule too?
Barnard, what is your point?
Every blogger here uses the SM Intern handle, contrary to urban legend.
Also, don’t you feel just a little bit bad that you’re being like this on a thread about something like this?
“Also, don’t you feel just a little bit bad that you’re being like this on a thread about something like this?“
I’m not sure what you mean. I think as long as people aren’t trolling, it shouldn’t be a big deal to use different handles, much like an avid reader of sepiamutiny can recognize when a moderator is using a different handle than normal to express something.
And I was responding to what SM Intern had said, but thanks for replying Anna.
Dammed if you do, dammed if you don’t. While I see your point, the thing is that if someone else noticed before the intern, they would be calling SM Intern out. These are the rules and it would be fair if everyone stuck by it.
did you contact any other desi-focused blog? Generally, if you want something bad enough, you will find a way to make it happen. You can never be annoying to the blogs in question if you’re an underdog cause, like any effort to find bone-marrow matches for people of south-asian descent. Keep plugging away.
Barnard,
“moderators” a.k.a. bloggers do not switch handles on the same thread. I’m still not sure what you are attempting to accomplish with this persistent off-topic volley, but please stop. We get it, you think we’re unfair, you’ve made your point.
Further comments about commenting will be deleted. Does anyone have anything productive, on topic or Bevin-related to contribute?
Muralimannered: “did you contact any other desi-focused blog? Generally, if you want something bad enough, you will find a way to make it happen.”
In fact we did, and other sites and blogs we contacted including ultrabrown, uberdesi (thanks Santosh!), http://www.newportwaterfrontassociation.org, http://www.helpvinayandsameer.org (obviously) and even http://en.blogoholix.com/johnnie+walker/ had it up immediately.
I was only disappointed because SM introduced us to the cause and therefore, to be ignored felt more like a slight, albeit an unintended one. Moreover, we did make it [the drive] happen.
Thanks Anna for your response.
for those of you in Queens/LI, I got an e-mail from my friend about further drives at Herricks High School today and next weekend:
Swab4Bevin!!!!
Setup by Herricks Indo-US Community
Dates & Times: October 13th 2007 (8 PM) Saturday, October 19th 2007 (8 PM) Friday, October 20th 2007 (8 PM) Saturday,
Location: Herricks High School, 100 Shelter Rock Road, New Hyde Park, NY 11040
go! I’ll be telling my parents to.
at the san diego asian film festival yesterday, there was an ad from sharp promoting screening, so hopefully that bring in some folks as well.