New York:
Amit Gupta, the founder of the photography Web site Photojojo, received an outpouring of support from fans, friends and his more than 14,000 Twitter followers after he announced that he had acute leukemia and needed a bone marrow donor right away.
Online marketing executive Seth Godin, a friend and colleague, offered $10,000 to anyone who matched Mr. Gupta's specifications and donated marrow. Another tech buddy, Aviary chief Michael Galpert, added an additional $10,000. (After learning that it is illegal to pay for a donation, they said they would pay the first person whose marrow matched Mr. Gupta, donation not necessary.)
Thousands of blog posts and tweets later, a veritable army of social media-savvy people has been dispatched to find a donor for Mr. Gupta.
On Friday there's a "Brown Bones Benefit Party" in New York, where hundreds of guests are expected to register to become marrow donors. A nonprofit organization, South Asian Marrow Association of Recruiters, or S.A.M.A.R., will cover costs for lab tests and data maintenance, at about $100 per person. Parties are also planned in San Francisco, Chicago, Ann Arbor, Dallas and New Haven, and potential donors in other parts of the United States can get a free test by mail to see if they are a match.
Finding a bone marrow donor is always an exacting process. Unlike blood transfusions, where blood type is the key determinant, successful marrow transfusions rely on matching as many as 10 different genetic markers found in white blood cells, which regulate the immune system.
Minorities are under-represented in bone marrow registries around the world, including among the 9 million volunteers registered with the United States National Marrow Donor Program.
For South Asians, the search is further complicated because populations from the region have more combinations of genetic markers than any other group. South Asia's long history of conquest and immigration, coupled with a diverse onslaught of viruses and bacteria, has created genes that are incredibly unique, says Dr. Narinder Mehra, head of the Department of Transplant Immunology & Immunogenetics at the All India Institute of Medical Sciences, or A.I.I.M.S.
Finding the right match for Mr. Gupta may mean taking the search to India. Indian supporters of Mr. Gupta have started asking how they can help.
When an A.I.I.M.S. patient requires a marrow transfusion, doctors first look to the patient's family, and then try to identify the region of India where the person's ancestors lived, Dr. Mehra says, asking questions like "Is this person from Punjab? Is he a khatri," meaning, from a north Indian community.
India does not have a large nationwide marrow donor registry. Attempts to create one have encountered bureaucratic hurdles, fizzled out or have been put on hold.
During a presentation at the World Marrow Donor Association several years ago, doctors from the A.I.I.M.S. said they hoped to fill their registry with 5,000 new volunteers a year. The registry now has just 3,000 donors.
In April of 2009, doctors from a Mumbai hospital said they had set up the nation's first bone-marrow registry, and were aiming for 1 million volunteer donors. Two-and-a-half years later, the Web site they set up for Marrow Donor Registry India is no longer functioning.
"This has been one of my life's goals, and till now it is in a sorry state of affairs," said Dr. Mehra at A.I.I.M.S. Testing and typing donors and maintaining a database is expensive, and there is no way to recoup the costs until patients or insurance companies can be billed for donations, he said.
The Indian government's pledge to fund a database has been stymied by bureaucracy, he said. "There is a consensus that there is a need for a donor registration database, but no clarity on how to go about it."
In 2004, Tim Dutta, a venture capitalist and social entrepreneur, created a nonprofit organization called MatchPia, after his girlfriend Pia was diagnosed with leukemia. Together they signed up over 30,000 South Asians in America and found a match in late 2004. She underwent a successful transplant, and they married a year later.
In early 2007, Mr. Dutta started a campaign to register marrow donors in India, and signed up thousands by going to large corporations. But Matchpia disbanded soon after, Mr. Dutta said, when an American sponsor violated an agreement and he separated from his wife.
Mr. Dutta said he is trying to recruit new sponsors to test the approximately 5,000 volunteer donors he recruited in India. He hopes to re-launch his nonprofit organization to help South Asians find donors later this year, he said.
Getting donors registered and finding a match is just the first step, say experts. Not everybody who registers is willing to give marrow when it is needed, said Rafiya Peerbhoy Khan, who heads S.A.M.A.R.
The group often has to actively coax donors to go through with donations when their marrow matches a patient in need, Ms. Khan said. In addition to Mr. Gupta, the group is now looking for South Asian donors for two boys under the age of 10 and a man in Florida, she said.