10/10 for Amit

Remember Amit Gupta? He was diagnosed with Leukimia in September 2011 and thus began the largest social media driven internet friendly bone marrow donor recruitment campaign we’ve seen to date. He has something to share today.

… After over 100 drives organized by friends, family, and strangers, celebrity call-outs, a bazillion reblogs (7000+!), tweets, and Facebook posts, press, fundraising and international drives organized by tireless friends, and a couple painful false starts, I’ve got a 10/10 matched donor! You all literally helped save my life. (And the lives of many others.) [amitgupta]

 

I am stunned by this good news! As we’ve blogged before, South Asians have a 1 in 20,000 chance of finding a donor match and to find a perfect match is even more of a slim chance. This is one of those circumstances that highlights how social media campaigns can turn into real life successes! Of course, Amit still has a battle ahead of him.

Tomorrow, I’ll be admitted to Dana Farber in Boston for 4-5 weeks.

 

First I’ll get a second Hickman line to allow direct access to my heart (for meds and for nutrients if I’m not able to eat). Over the next week, the docs blast my body with a stiff chemo cocktail to try and eradicate all traces of cancer cells. In the process, the immune system I was born with, and my body’s ability to make blood, are destroyed.

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‘Skewed Demographic’ Highlights Bone Marrow Disparity

The online art exhibit Skewed Demographic brings together artists to address the racial disparity in the bone marrow registry. Each piece in the online gallery is being auctioned off with proceeds going towards processing bone marrow testing kits.

Photographers Shirin Adhami and Sunita Prasad curated the show in honor of Photojojo founder Amit Gupta and other South Asian leukemia patients. Adhami first met Amit Gupta when both were undergraduates at Amherst College a decade ago. When Gupta first announced his diagnosis and his need for a bone marrow donor, Adhami was one of his many friends who rallied to action.

“Personally, I was working on doing drives and I was thinking of doing a more symbolic gesture,” said Adhami during a recent phone interview. “How could I reach an audience that maybe couldn’t donate marrow? How could it be more than a request for money?”

Adhami decided to put the call out to her contacts to see if they would be willing to donate their work to the cause. “The idea is photo-based, but the artists are not necessarily all photographers. The inspiration is really from Amit’s photo interest,” she said. “There were times that I have not even realized I was using one of his inventions until much later. He has really affected the photo world with Photojojo.”

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Aziz wants you to give a spit

Aziz Ansari and his Parks and Recreation co-star Chris Pratt just released this PSA encouraging young people to get their cheeks swabbed for the bone marrow registry.

DoSomething.org’s Give a Spit campaign is specifically targeting young people between the ages of 18-24. The campaign and its partners Be The Match and DKMS “need inspired young people like you to take the lead and register more committed college-age donors, especially minority donors. You can save lives by running a “Give a Spit” drive on your campus. Just sign up and we’ll get you everything you need to run a drive.”

Plus, there are prizes: The drive that gets the most donors signed up wins $2,000 for a celebratory party and everyone who enters the registry through a Give a Spit drive is eligible for a $500 college scholarship.

Readers who are curious about what donating entails should check out Taz’s recent interview with two donors. You should also check Amit Gupta Needs You for a list of drives across the country.

(Via Gawker)

What Is It Like To Give?

The countdown clock ticks down ominously on www.amitguptaneedsyou.com, counting down the 22 days left of finding a perfect donor bone marrow match for Amit Gupta, who I blogged about before. The bounty for a match (just a certified match, not a donor) is up to $30,000 generously donated by his friends. Amit has now been interviewed on CNN by Sanjay Gupta and his campaign is gaining national traction, with a bone marrow sign up table at almost every Brown event.

It’s surprising to me after all this time that there are still people not registered in the bone marrow registry. At last week’s San Francisco Subcontinental Drift, I eagerly convinced my friend to sign up to the bone marrow registry at the back table, surprised that he hadn’t done so already. “I’ve been in the registry for 7 years,” I told him. “All it takes is 4 simple cheek swabs and you are in.” Within minutes, he was in the registry too.

But what is it like to actually donate? That I didn’t have experience in. I do know that if I ever get the chance to donate, I’ll be 99.9% willing to step up to the call of duty. I decided to interview two South Asian American women who had the opportunity to donate bone marrow, Kristeen Singh and Darshana Vakharia. Here’s what they have to say:

Congratulations! When did you do it and what was the overall experience like?

Kristeen: Almost a year ago (Dec 14, 2010), I donated bone marrow for a seventeen year old boy with Leukemia. I was told that the recipient was the same age as my nephew, so it was natural I wanted the same for this boy. As a donor it feels like yes, we are doing it, and yes we are life savers.

Darshana: I donated in January 2004.  When I donated all I knew was that it was for a little girl who was 9 years old.  My oldest daughter was exactly the same age at that time.  Needless to say I couldn’t do the procedure fast enough.  All I remember right now is how lucky I felt that I was a match and was actually donating.

When you got the call that you were a bone marrow match, what was your decision making process?

Kristeen: I was in disbelief that I was actually called. It wasn’t until I had my blood tested that confirmed I was the best match that, I believed it. I was excited that during the holiday season, I would get to share the gift of life. Continue reading

Amit Needs Your Brown Bones

The internet world frenzied with bone marrow call outs this week when word spread that entrepreneur Amit Gupta, founder of  http://photojojo.com/ discovered he has acute leukemia and needs a bone marrow transplant.

Two weeks ago I got a call from my doctor, who I’d gone to see the day before because I’d been feeling worn out and was losing weight, and wasn’t sure why. He was brief: “Amit, you’ve got Acute Leukemia. You need to enter treatment right away.”

 

I was terrified. I packed a backpack full of clothes, went to the hospital as he’d instructed, and had transfusions through the night to allow me to take a flight home at 7am the next day. I Googled acute leukemia as I lay in my hospital bed, learning that if it hadn’t been caught, I’d have died within weeks.

 

I have a couple more months of chemo to go, then the next step is a bone marrow transplant…. [M]inorities are severely underrepresented in the bone marrow pool, and I need help. [amitgupta]

 

We’ve told you before of numerous cases where bone marrow donors are needed -  for Sonia Rai, Maya Chamberlin, Vinay & Sameer, Bevin Varughese, and more. For the most part, these stories have ended tragically. The sad thing is, they did not have to end the way they did. The health disparity is stark: There are 9.5 million people in the bone marrow registry; only 1% of them are of South Asian descent; that means South Asians have a 1 in 20,000 chance of finding a match.

What are you waiting for? A simple (FREE) cheek swab can save a life. Continue reading

Yogurt: A Gut Feeling in the Mind

When I was younger, yogurt repulsed me. This was no small thing because my parents come from southern India, where yogurt seems to serve as a sort of digestif without which meals don’t feel complete. There was always a pot of homemade yogurt in the fridge or on the kitchen table.

Family members would marvel (and sometimes take offense) that I wasn’t finishing up my meal with yogurt, mixing it up with rice or using it to temper the spicy foods or pickles. Imagine a grandma’s Ayurvedic admonitions in place of a Robert Mitchum voiceover and a symphony of joyful slurping instead of Copland’s “Hoe-down” and you’ll have an idea of what the Yogurt, It’s What You Eat After Dinner experience was like. Some of the reasons why I was supposed to eat it:

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Eating American: The Fat Cost of Fitting In?

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Recently the President released his long-form birth certificate to show everyone, perhaps especially those birthers gone berserk, that he’s an American born in America who belongs in the White House. On a day-to-day basis, desis in the U.S. are not being asked to pull out their long-forms (not yet anyway), but are there other ways in which we’re made to feel that we have to prove we belong, that we’re American? New research from psychologists seems to address this question with a particular focus on the food choices of immigrant groups–”Fitting In but Getting Fat: Identity Threat and Dietary Choices among U.S. Immigrant Groups.”

Psychologists show that it’s not simply the abundance of high-calorie American junk food that causes weight gain. Instead, members of U.S. immigrant groups choose typical American dishes as a way to show that they belong and to prove their American-ness.

“People who feel like they need to prove they belong in a culture will change their habits in an attempt to fit in,” said Sapna Cheryan, corresponding author and an assistant professor of psychology at the University of Washington. “If immigrants and their children choose unhealthy American foods over healthier traditional foods across their lives, this process of fitting in could lead to poorer health,” she said.

The results are published in the June issue of Psychological Science.

Public health studies show that diets of immigrants, including those from Asia, Africa and Central and South America worsen the longer they stay in the United States. (press release)

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A call to all brown gene nerds!

Update II: Several people have emailed me and confirmed that they finally purchased a kit. A little over $100 seems to be a good price point for what is mostly recreational genetics. Tomorrow I will post on what you’ll see in your 23andMe account, and how you have to interpret it if you are brown.

Update: Sale is operative. Limit 5 per person!

Just thought I’d pass on word, tomorrow the 23andMe genotyping service is going to have a sale. The details:

When: April 11th, 12 AM PDT to 12 PM PDT (so 3 AM EDT to 3 PM EDT)

How much: $9/month for 12 months = $108 per year for their analytic service. The kit cost, $199, is waived for the sale.

What you get: Ancestry analysis, trait assessment, and disease risk estimates. I wouldn’t put too much stock in the last in terms of bang-for-buck if you are not adopted…though the last person I explained that to ended up finding over 50% probability of macular degeneration (not a 50% increased risk, a 50% probability of developing the disease!).

For nerds the big deal is that you can get your raw genotype for 1 million markers. There are several personal genetics projects which have been started by people pooling their data. I put up a simple tutorial for those curious, and have started my own African ancestry project. But for readers of this weblog, Harappa is the way to go. Zack has over 80 participants now. Below the fold I’ve placed a tree which shows the genetic relationships in terms of ancestral quanta. I’ve underlined myself (I’m right next to my parents, as you’d expect). Continue reading

Tiny Mom’s Kidney Donor Fired from Job

Remember at the beginning of this month when I told you the amazing story of Amy Donohue and how she decided to donate one of her kidneys to the mother of a Twitter acquaintance? As you’ll recall, Kirti Dwivedi put out a desperate call for kidney donors via Twitter and Facebook after her mother’s kidneys started functioning at less 20%. Amy, who Kirti had only met once at a function, stepped up to offer one of her kidneys in February 2011 and Project #TinyFabKidney was born. Since then, the two have met each other’s families and planned various fund-raising activities together as Amy has undergone testing to determine if she’s a match. A few weeks ago, Kirti emailed me with the good news that Amy was indeed a match and that surgery was scheduled for April 19th! This past Tuesday, however, Amy recieved some devastating news. Her company told her they were letting her go because she hadn’t met her sales goals. Today CBS 5 in Phoenix put up this story:

Kirti said she was shocked when she learned Donohue lost her job.

“Amy is donating a kidney to my mom and she lost her job because of spending time testing for it. It’s really hard to understand how that could happen, and it’s hard not to feel guilty or upset,” said Kirti Dwivedi.

Amy estimated she used about seven sick and personal days in the past couple of months to go through testing. She had held her job for approximately seven months.

“I take full responsibility. How can I not say I’ve been distracted? I’ve got a big thing going on in my life,” said Donohue.

She said while she does not want her job back, she wishes her company had handled her situation differently, considering the circumstances.

“Sometimes, accommodations need to be made for people when something huge is going on,” said Donohue

Amy has written up her own version of her firing over on her personal blog. Personally, I would have thought an employer would appreciate the value of a person with Amy’s courage and empathy and try to accommodate such heroics. But for some people, it’s all about the bottom line.

If you’re interested in learning more about Project #TinyFabKidney and sending your support to Amy, Kirti and Tiny Mom, you can find them on Facebook. And you can donate here. Continue reading

Cure Sonia – Bone Marrow Donor Needed

cure_sonia_rai_2010.jpgWhile visiting Boston on business, I learned some shocking news this past weekend. My good friend Sonia was diagnosed with Acute Myelogenous Leukemia (AML) about 10 days ago. She is currently undergoing chemotherapy. She is 24 and in urgent need of a bone marrow transplant. I am still in shock and having a hard time absorbing this. Since I have known her, I cannot imagine her as being anything other than the cheerful, always smiling, bollywood-movie-loving, happy and positive person that I have known her to be. She is an active member of the South Asian community and many may recognized her contributions as a board member of NetSAP Boston. I pray she finds a donor soon.

Team Sonia – Sonia’s brother Sumit Rai, family and friends are organizing drives today and in the next few weeks. Please take the time to help spread the word about the drives and join the NMDP registry if you have not already done so. You can visit www.curesonia.org, or visit their Facebook page.

As you may be aware from our previous posts on the topic, the National Bone Marrow Registry (NMDP) is in dire need of more ethnic donors. South Asians, as well as any minority, and especially people of mixed ethnicity are needed. Sonia is currently receiving excellent care at Massachusetts General Hospital in Boston, but in order to survive beyond the next few months, she requires a bone marrow transplant. Most matches occur within ethniticty and increasing the number of South Asians registered as potential bone marrow donors will help Sonia as well as many others who are searching.

Among the 7 million registered donors currently, approximately, only 2% are South Asians. Ethnic Minorities have a 30-40% chance of finding a match from the existing NMDP registry. Caucasians have an 80% chance of finding a match from the existing NMDP registry [link]. Continue reading