‘Skewed Demographic’ Highlights Bone Marrow Disparity

Skewed Demographic

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 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

Check out this PSA Aziz Ansari and his Parks and Recreation co-star Chris Pratt just released 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.”

And there’s more! 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)

How to save a life

Entrepreneur Amit Gupta, founder of Photojojo, was recently diagnosed with leukemia and is in need of a bone marrow transplant.

He first blogged about his diagnosis last week:

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. As Jay and Tony describe below, minorities are severely underrepresented in the bone marrow pool, and I need help.

Amit’s not the only South Asian who is waiting for a match. Dr. Anand Patel, a father of three based in Florida, also recently received a leukemia diagnosis. His family and friends have been organizing bone marrow drives across the country. You can learn more about these drives on Anand’s Facebook page.

I’ve written before in this space about the under-representation of South Asians in the National Bone Marrow Registry. A South Asian patient in need of a bone marrow transplant currently only has a 1 in 20,000 chance of finding a match.

We as a community can do much better.  A simple cheek swab is all that is required to enter the marrow registry. More details about what happens if you are a match can be found here. Continue reading

Are you a match for Sonia?

Sometimes I get an email that’s so sad that I know that I have to do a post about it, in the hopes that someone out there may be able to help. Sonia Rai is a 24-year-old Massachusetts woman who was recently diagnosed with Acute Myelogenous Leukemia. She desperately needs a bone marrow transplant to survive.

From the e-mail one of Sonia’s friends sent me earlier today:

Patients are most likely to match someone of their own race or ethnicity. I am requesting you to please help spread the word about Sonia and her family’s effort to save her life. They are currently organizing many bone marrow drives over the next few weeks in several cities. Visit http://www.curesonia.org for more information. Please keep checking back, because more cities will be added.

You can follow the Cure Sonia campaign on Facebook here and read Sepia Mutiny’s post on Sonia here.