CANCER: Cancer is a chronic disease of rapid growth and or invasion of cells that are uncontrolled. CANCER does not discriminate and can affect humans, plants, and animals. Over 10,000 children and adults could benefit from a marrow or blood cell transplant every year, however, many of them are not fortunate enough to find a match in the pool of donors. Ethnic minorities have marginal success with finding a match in the National Marrow Donor Program (NMDP) and are in dire need of more registrants. 

There are billions of Asians, however, there only 20,000 registered in the South Asian Registry—leaving Asians and ethnic minorities with only a 30% chance of finding a match in comparison to Whites having up to an 85% chance. Patients have a 25%-30% chance of finding a match within their own family and the other 70%-75% is found in an unrelated donor. From cultural nurture, it is our responsibility to be altruistic and support those who need our help; in the end, everyone benefits from cooperation.

Chances of finding a match are slim for ethnic minorities because Human Leukocyte Antigens (HLA) needs to be as closely matched between the donor and the recipient to increase the chances of a successful transplant. Like inherited characteristics such as the eye, skin, and hair color, the HLA are markers on the white blood cells. These genetic factors play a role in finding a matching donor; patients are more likely to find a match with a donor who shares the same racial background.  A 6/6 match is a perfect, ideal match, but with a shortage of ethnic donors, the probability of finding a 6/6 match is slim to none.

At any given time, there are over 6,000 patients with bone marrow deficiency diseases searching for a donor within the registry. When patients reach a stage where the only possibility of surviving is receiving a marrow transplant, they turn to YOU. Once there is a match, 70% of White donors will proceed with a match, whereas only 50% of ethnic minorities will continue. Issues of cultural beliefs arise but if everyone was informed equally, more lives can be saved.

As of this year, only 25% of donors in the NMDP are ethnic minorities. Together, WE can make a difference by raising awareness about the astounding statistics and register before a close friend or family member is affected by CANCER.

My sister and I have teamed up with the Asian American Donor program to raise awareness about bone marrow transplants and the scarcity of the ethnic minority donors. For more information, please visit their site and the sites listed below for up-to-date drives and benefits.

http://www.projectkhanh.com/

http://www.projectmichelle.com/

http://teamanh.org

http://teammatthew.org/

http://www.projectswab.com/

If you are not an ethnic minority but wish to register, I encourage you to visit http://marrow.org/

Michelle Maykin of Project Michelle passed away on Saturday, July 25th. She left much to be respected and admired. Having gone through remissions and relapses, she was a real genuine icon for organ and tissue donation, particularly with the Asian American community.

Check out photos of a card I received from AADP a few weeks ago. I can’t believe 4 patients have already received stem cell transplants because of our Project Michelle efforts. Note, that these stats are just from AADP. I bet other Project Michelle drives outside of the SF Bay Area have also had success. I would love to get a total count of the donors that registered at a Project Michelle drive that have donated their stem cells to save someone else’s life (I’m an auditor….we like numbers). I am so proud of all of the Project Michelle volunteers. Again, thank you from the bottom of my heart.

I’m doing pretty good (mentally and physically) if I don’t say so myself. My days are filled drinking all sorts of concoctions, doing hours of qi gong and praying. This is a full time job, but I think it’s good to keep myself busy. While I do have my moments of sadness, overall I feel calm and at peace.

-Michelle Maykin, “A Silver Lining,” July 8, 2009

What’s really crazy, and actually angers me for reasons I can’t quite articulate, is that on July 8th I noticed that the search term “michelle maykin died” led two people to my blog. It made me really sad just to read those words. I scrambled to find anything I could on the Internet about her well-being. When things seemed to check out okay with her survival, I consciously put it in the back of my mind. Who wants to think about Death when someone was, at one point, so close to it? I’m superstitious, and to consider the possibility would have put Death and Michelle in the same sentence, would have connected them, would have been equivalent to wishing her ill will. I would not do that. After that, the search term disappeared from my analytics.

Michelle married the love of her life, Van–someone described to me as a real stand-up guy–and that’s where I make myself stop thinking about her departure.

I never met this woman and I’m crying.

You can still register your marrow sample for free. Directions are here.

Remember Michelle Maykin of Project Michelle? The 26-year old Cal grad diagnosed with leukemia? Though I haven’t been following or updating on her progress daily, I am happy to report that she did find a donor. In fact, according to Helen at Asians for Miracle Marrow Matches, “[Michelle] has had her double cord blood transplant and passed her 100th day mark and moved back home to SanFran. :)”

Of course, increasing the chance of finding possible cures for future Michelles can only be helped if more people register for the National Marrow Program. In the case of Michelle, Vinay, and other Asian American leukemia patients, the National Marrow Program specifically needs more Asian representation in their registry.

The organizers at Asians for Miracle Marrow Matches have initiated a March campaign to increase the registrant pool of Asians. They’ll completely comp your registration fee, and even if you find this post after March, you can get that fee waived! It’s a $52 fee waiver, but in all seriousness, it’s a potential lifetime of value. (I’m big on life giving life. You should be, too.)

In spirit of March Madness, Asians for Miracle Marrow Matches is starting a small campaign called Marrow March Madness in hope to increase the registrant pool through a new method: online.

Each year thousands of patients are searching for their one life saving match.  They depend on people like you to register as marrow donors and potentially save their life. HLA typing matches depends heavily on ethnic background so your registration will help someone of your own ethnic community.

Here are just a few stories of patients in search, patients with transplant, and patients that passed away.  Hopefully you’ll find them compelling and therefore join in on this worthy cause.  (you can just click on the links below)
http://www.projectmichelle.com
http://www.teamkrissy.com
http://khanhvo85.blogspot.com/
http://www.savejodie.com
http://www.ericamurray.blogspot.com/
http://www.teammatthew.org/

HOW TO REGISTER
1. Click here: http://marrow.org/HELP/Join_the_Donor_Registry/Join_Now/join_now.html
2. Enter this promo code when asked: CTFHOPE03 (03 as in zero three)
*Entering the code enables you to waive the HLA typing fee of $52 that they normally charge!  Another word, enter it so your registration is FREE.
**Code expires at 11:59pm March 31, 2009
(should you be reading this blog post that date, just change the end of the code to read 04 which stands for April and so forth)
3. Wait for cheek swab kits to come in mail
4. Swab yourself, mail it back.

Once you’ve registered, you’ll only be contacted should you show up as a match.  Otherwise you’ll just remain on the registry in peace until you’re 61, which is when you’ll be automatically removed.

ACTUAL DONATION PROCESS
1. Click here for a clear flow chart: http://asianmarrow.org/donors/howtobeadonor/index.html

If you aren’t able to register in March, just change the end of the code to read “04″ which stands for April and so forth: April – CTFHOPE04, June – CTFHOPE06, August – CTFHOPE08, etc. Updating the registration code to the current month waives that $52 fee!

If you’ve already registered, please help by passing this information along to your friends and family.

Though the original deadline for finding Michelle Maykin a potential bone marrow donor has come and gone, the search continues. More bone marrow drives took place this past weekend, a good three weeks after the original “June 21st” must-find date. Efforts continue, but hope is not lost (can not, should not be). A number of “commercials” to reach out to more communities that could aid Michelle’s (and the larger) cause have been created, including a YouTube spot that features a number of Asian American icons and (major surprise here) prime endorsement on MTV via America’s Best Dance Crew.

“Are You Ready to be a Hero?” starring, in order of appearance: J-Splif, Nicole Bilderback, Brian Yang, C.S. Lee, Parry Shen, Michelle Krusiec, Prohgress, DC Wolfe, PK, Kev Nish, Steve Aoki, Arden Cho, Danny Cho, Lanny Joon, Vivian Bang, Tamlyn Tomita, Tim Chiou, Julia Nickson, and David Lee McInnis.

Thanks to Bionic of Supreme Soul, Michelle Maykin’s/Asian American’s/All Minorities’ plight got some attention on MTV. (Of all places! I’m still impressed.)

Just three days after Project Michelle passed the June 21st marker, another leukemia patient and friend of Michelle’s passed away. Other friends I worked with on the Project Michelle campaign volunteered for Vinay’s campaign, as well. That makes it tough. It’s a couple of degrees away from me, but still very real. Puts things into perspective. And just generally reminds us why we should get off our asses and at least rejoice in the fact that we can cognitively complain about things once in a while. It implies that we have more control of our situation than good people to whom truly bad things are happening. If you need some explanation on why anything from Project Michelle appears here, take a look at some of my thoughts after a day’s work of volunteering.

On a backstage politics note, remember Jabbawockeez? The second part of their schtick (The first being their masks.) was their love and dedication to the late Gary Kendell. (Does it color things more to know that Gary Kendell died from HIV? And lived the end of his life somewhat removed from those he used to spend so much time with? I’ll stop there.) Supreme Soul does varsity jackets, and now they’re backing up Michelle Maykin.

Ain’t nothing wrong with any of the above, but it sure is interesting.

This is the last weekend we have to find Michelle a donor match.

Bone Marrow Registration Drive
Saturday June 21, 2008
Ranch 99, Milpitas Square
338 Barber Lane
Milpitas, CA

For more information, call (510) 299-4486 or e-mail sanjeet (dot) mitra (at) gmail (dot) com.

From ProjectMichelle.com:

Thursday, June 19, 2008 – 5:43 pm
MICHELLE UPDATE – June 21st Deadline (posted by Mabel)
When Michelle initially relapsed on May 7 she immediately started chemotherapy to temporarily ward off her cancer. We knew a bone marrow transplant was her only chance at long term survival, but also knew she didn’t have a donor match. We hoped six weeks would give us enough time to find a match while also preventing her from having to undergo more chemotherapy, but unfortunately June 21st has quickly come upon us and we’re still searching.

Michelle will be starting another round of chemo in the coming weeks to make sure her leukemia stays in remission. In the meanwhile, I plea for all of you to keep up your amazing efforts. The more people we get registered during the next month, the more we improve Michelle’s odds of starting the bone marrow transplant process without unnecessary chemotherapy. Each additional round of chemo that Michelle is put through deteriorates her health and increases the chances of her leukemia growing stronger and more immune to treatment.

Thank you for continuing to fight for Michelle, we need all of the support possible as we continue the search!

• May 26, 2008. Fremont bone marrow drive.
• May 28, 2008. Confirmed for Club Sport Fremont!
• June 2, 2008. 75 registrants in one day!

Good news about our bone marrow registration drive last Saturday. Me and a bunch of American Desis registered 75 people into the National Marrow Donor Program Registry! It takes a calling close to the heart to rise a dozen 20-something volunteers on a Saturday morning, but we did it, and I’m glad I didn’t choose the lazy option of not being involved. Michelle’s aunt Dip even came out, adding to the loved ones in Michelle’s life, pressing for a cure.

The morning was a bit of a reunion for most of us. I hadn’t seen a number of the drive’s attendees since graduating high school (Six years ago, holy wow.), and others I had only seen a couple of times throughout our separate but parallel college careers. There wasn’t much time for nostalgia, though, when every few seconds I had to test my willingness to talk to strangers. I started drawing them away from their “I’m late for class” hustle with statements that made it seem like they ought to have expected us there, “When you have ten minutes after your workout, we’ll be here til 12:30.” There was a lot of “hollering” going on, and a lot of strategic tag teaming.

At one point, I had been talking for too long and definitely said “We’re running a boner drive for…”

Un/Thankfully, that person totally ignored me and ran quickly out of range to the fancy schmancy locker rooms.

It’s an honest mistake! Anyway…

Of course, we got the obligatory bulk of questions about the pain involved in the bone marrow donation process, but unfortunately this is something one should expect. It started even before the event actually rolled around, with an old college classmate harping on the alleged pain of the procedure on our Facebook event comment wall. To those people, I had to hold myself back from retorting “Soreness after the anesthesia wears off. Five rounds of chemo. You’re up and about at a health club, gimme a fucking break.” (This natural, understandable fear of pain is also part of a larger problem, which is lack of knowledge about bone marrow donation procedures. 70% of those who donate bone marrow don’t undergo procedures that directly draw marrow from the bones. Read here for more.)

What really made me feel the worth of the day’s work, though, was when my friend – we’ll call him LD because he had a thing for Lincoln Douglas debates – made a short comment to me while we were packing up. LD is the one who drew us all together, admitting himself to hitting up all his old Asian friends from high school to find his volunteers and networkers. Getting a call from him about a volunteer event was never something I expected from him. LD’s a cocky guy, and he knows it. He’s also very smart, and is one of those types who knows exactly where his abilities will get him. Fortunately for him, it always got him to the top, including an associate position at Goldman Sachs straight out of college.

LD eventually left Goldman Sachs earlier than expected, citing that the work was just too much for him. For such a proud guy, this admission from him was the first time I had ever seen him so humble – And I’ve known the guy since kindergarten! (Maybe earlier.) Being so down to earth was not an obvious part of his personality. Because I saw him only a handful of times after high school, it was like seeing Version II of someone reformed when I learned of his career choice at his birthday last winter.

On Saturday, though, as he packed up the poster easels, he leveled with me again. I have a feeling he didn’t mean to be heard by many, but he simply said, “This is the thing I think about every day. It’s been the last thing on my mind before I go to bed for weeks.”

LD knew Michelle through their business fraternity, Delta Sigma Pi, and lived with Michelle’s boyfriend Van in San Francisco – all before Michelle was diagnosed with leukemia in 2007.

“And then I think about it from Van’s perspective, like, her having leukemia, and it just gets me sad.” This, from the boy who made fun of my friend for having a crush on him in junior high.

Again, he touched on the theme of overworking in his life and said “I was pissed I wasn’t able to help last year, when they started doing stuff right when she got diagnosed.” Normally I find “what he really meant to say, but couldn’t say” statements really annoying, but in between the lines, LD was saying “I need to do this.”

Hearing all of this from LD left me a little bit speechless. All I could manage to say was “Really?” “Wow.” It’s weird growing up alongside someone and only getting glimpses of each other once in a while. It made me melancholy, but it also reminded me of why I said yes to helping LD’s friend. Though he can be a bit of a mule at times, he’s a good guy. He’s always got his friends’ backs and there’s something to be said about people who aren’t afraid to reconnect with old acquaintances for the benefit of others.

I’ve never met Michelle, but I find myself almost hoping that it’s me that could be her match, that there’s solid assurance that someone in our stack of 75 applications will be willing to prolong her life. If she was able to draw LD out of his hardened masculine shell, imagine what she would do if her cure came along.

Editor’s Note: The deadline to find Michelle’s donor is June 21st. We plan on running another registration drive in a couple of weeks at the Dave & Buster’s in Milpitas. Our goal at that drive is 100 new registrants.

Got a random call out of the blue the other day from a guy I’ve known since kindergarten. (This actually isn’t that rare. I’ve been told by many friends that the connectedness my social circle has with fellow alum from grade school to high school is really impressive.)

This friend is a personal friend of Michelle Maykin, a young Berkeley grad living with leukemia. Michelle has made it through five (FIVE!) rounds of chemotherapy, but she has since relapsed and a mass has been discovered on her brain. Michelle appears to be a strong, positive person, but what the diagnosis comes down to is the necessity for a bone marrow transplant. And here, all you Asian readers, is where you can help with Project Michelle.

The friend called to round up his friends in the Bay Area for a bone marrow registration drive. It should go without saying how helpful it is to offer what you can to the community around you, be it volunteering energy, promotional networking, or even your own body’s resources. With bone marrow registration, different proportions of populations affect the availability of transplants for those in need. The “populations” I’m referring to are based on race and ethnicity, which really do affect our medical opportunities.

For whatever reason, Asians in particular are severely underrepresented when it comes to bone marrow registration. I should also mention that for whatever reason, matches between potential donors and the people who need them are more likely to occur when the two parties come from similar racial and ethnic backgrounds. (Minorities in general are underrepresented in bone marrow registries. See NBC 7’s coverage on the shortage here.)

This presents a problem for survivors like Michelle, who happens to be Vietnamese, Chinese, and Thai. The low number of Asian registrants describes all ethnicities within the race – Chinese, Indian, Vietnamese, Sri Lankan, and more (the list goes on and on and on). From the Project Michelle website: “Only 3% of all Asian Americans are registered as bone marrow donors.” That’s not very model minority of us, is it?

With the drives for Project Michelle, we are presented with the opportunity to not only find Michelle a potential donor (She needs one by June 21st.), but to also grow the number of Asians who have already contributed to the National Marrow Donor Program Registry. Michelle is definitely not the only one in need, and judging by all the glowing praise describing her in her bio, she’s smart enough to know that no matter what the outcome for a single patient, increasing the numbers in the Registry is better for the future. The Asian American Donor Program lists other wives, children, brothers, and friends who are also searching for matching donors.

That all said, that friend who called is in the final stages of confirming a site for a bone marrow registration drive on Saturday. The information below will be updated as required permissions are granted, and this entry will be made “sticky” so that all ye random blog visitors will have instant access to the latest:

Project Michelle
Bone Marrow Registration Drive

Saturday May 31, 2008
9:00 a.m. – 12:30 p.m.

Club Sport Fremont
46650 Landing Parkway
Fremont, California 94538

Please forward this link along to whoever you think might be able to come by Saturday morning (Registering takes only 12 minutes of your time, but if you’re interested, we can also use more volunteers!), or whoever you think can help promote the drive. Info will be added as necessary, including a Facebook event and contact information. Leave your inquiries in a comment and I’ll answer your questions if I can!

Thanks, friends,
~M.

P.S. This situation is close to many of my friends’ hearts because one of our good friends lost his 6-year old brother to leukemia when we were in high school. Just months after, his father passed away as well, no doubt heavily taxed upon by the death of his youngest child. (This particular family happens to be Chinese.)

Carl joins me while I was sick and he was getting ready for Margret's Birthday party. Check Out dvAsian this Sunday, May 25th in NYC at NOWHERE.

Also in this track I catch you up on the good and bad stuff in my life and Michelle Maykin (www.ProjectMichelle.com) who needs a bone marrow match before June 21st, 2008.

MP3 File

Soundtrack
Radio LCF
Strangers in Wonderland | on MySpace | on The Podsafe Music Network | on iLike – So Much More
Carl | www.myspace.com/thelyght4
Basic Black and The Off-Whites – Last Summer
Sofia Talvik | on iLike – Mother’s Way, Father’s Way – LIVE

VJoicemail: 206-495-6555
vjnetcast[at]gmail.com
radiolcf[at]tpg.com.au

Join the VJNetcast Appreciation Group

Honorable mentions can be found in the Links section or just Google it

P.S. I will update this post with proper links and stuff soon… UPDATED

From Carl:

Please forward to anyone you know of Asian descent, blast out to your email lists – they are particularly looking for folks of vietnamese and chinese descent…but any and all asians might be a match. it’s real important – thanks for reading…

“we have a good friend from CA, Michelle Maykin, who was diagnosed in February 2007 with Acute Myeloid Leukemia. after undergoing chemo and several months of being cancer-free, the cancer relapsed on May 7 and she needs a bone marrow transplant by June 21, 2008 to save her life. she just turned 26 years old and there’s lots of info about her at http://www.projectmichelle.com/.

michelle is chinese-vietnamese and so her chances of finding a match will most likely be someone of any or both of these ethnic backgrounds. there are about 7 million americans in the National Bone Marrow Donor Registry but only 7% are of any asian ethnicity and only .01% are of vietnamese ethnicity, so the numbers are not good. because time is running out, we’ll be organizing bone marrow registry drives within the next few weeks.

to register, all you have to do is have your cheek swabbed with a q-tip. it is 0% invasive and if there’s a match, 70% of all bone marrow transplants can be done via blood transfusion, which is basically not very different than getting blood drawn.”

I’ve attached a list below of upcoming drives in the NYC area. So far, they are doing them on the west coast and in Texas too. I’m sure there will be more, please refer to www.projectmichelle.com for updates. They even have kits that you can order to see if you are a match if you cannot make it to a drive. That info is on the website too.

St Barthlomew’s Church
Sat, May 17, 1:30pm – 5:00pm
109 East 50th Street, New York, NY 10022
(main entrance on Park and 50th)

Sunday, May 18
2:00pm
Jumeirah Essex House
2pm – 5pm
160 Central Park South, Suite #3810

Saturday, May 31
NEW JERSEY: Monmouth Chinese School At Frank J Dugan
Elementary
8am – 5pm
48 Topanemus Road Marlboro NJ 07746

Sunday, June 1
NEW YORK: St Catherine’s Church
10am – 3pm
523 Western Highway, Blauvelt, NY 10913

Thanks for taking the time to read. I’m going to be getting more involved in this – so if you need any help, have questions or ideas, feel free to contact me. Also, any groups or organizations you know of that could help us get the word out would be greatly appreciated.

Michelle

–
Carl Ka-Ho Li
SAG | EMC

www.myspace.com/carlkli