Edmonds resident Soren Ghorai started the nonprofit South Asian Marrow Initiative (SAMI) to raise awareness of leukemia and other blood diseases among South Asian communities. The junior at Eastside Preparatory School in Kirkland hopes that more South Asians in all of Washington state will register as bone marrow donors.

Two years ago, Ghorai’s aunt donated bone marrow to a 1-year old child in California, who had leukemia. “She was able to save the baby’s life because her bone marrow had blood stem cells. [That] replaced the baby’s stem cells, and the baby lived,” Ghorai said.

His aunt’s action prompted Ghorai to start SAMI. The organization gathers registrations from donors of South Asian descent in the greater Seattle area, which includes people from India, Sri Lanka, Bangladesh, Bhutan, Pakistan, Afghanistan, Nepal and various island territories in the Indian Ocean.

With the help of Dr. Rafiyah Khan, CEO and co-founder of South Asian Marrow Association of Recruiters (SAMAR), the 16-year-old Ghorai was able to host four events last summer, including one at the Bellevue Cultural Center, the Jaya Hanuman Temple and the Rockstar DSP concert in Seattle.

“She (Khan) was super influential in getting me started,” Ghorai said. “She has dedicated her entire life to researching stem cell transplants.”

Rafiyah and her husband Moazzam Khan founded SAMAR in 1992 in Rego Park, New York. It was one of the earliest nonprofits dedicated to registering and finding matching bone marrow donors among South Asians in the U.S.

“I thought it would be super cool to help out with that because South Asians are underrepresented in the bone marrow donation and issue,” Ghorai said, pointing out that about 3% of registered donors in the U.S. are of South Asian descent. “It’s a lot harder for South Asian patients to find perfect matches.”

The American Cancer Society reported that about 62,770 people in the U.S. will get some form of leukemia in 2024, and 23,670 will die from it. Most forms of leukemia occur among infants to young adults, and cases among those over age 45 are uncommon.

The Health Resources & Services Administration (HRSA) reported that there are about 9 million potential bone marrow donors in the U.S. with 268,000 cord blood units in the donor registry. In 2021, 5,073 unrelated and 4,276 related bone marrow and cord blood transplants were performed in the U.S. and are reported to the Center for International Blood and Marrow Transplant Research (CIBMTR).

Be the Match, another bone marrow registry, has about 20 million potential donors in the U.S. with fewer than 300,000 South Asian registrants, representing just 1.3% of donors. According to the organization’s 2023 report, white patients have a 79% chance of finding a match compared to 60% of Indigenous Americans, 48% of Hispanics and Latinos, 47% of Asians and Pacific Islanders and 29% of African Americans.

“For the next year, I’m trying to expand [SAMI] and create other chapters nationally at different universities and high schools,” Ghorai said. “Expand around Washington first and expand to other states with large South Asian populations, like New York and California. We’ve (had) an impact here locally but in order to make a bigger difference, we have to reach a bigger group of people.”

In the greater Seattle area, SAMI has registered 500 donors so far with the help of 10 volunteers. “We’re always looking for volunteers to host multiple events at the same time every weekend,” Ghorai said. “I’m always looking for new events. To host one at Edmonds would be great.”

Ghorai and some of SAMI’s volunteers are helping a young California woman named Shobha, who has leukemia, to find a matching donor.

“I encourage anyone who is learning about this cause to go on the National Marrow Donor Program website, and you can get mail and a kit and you can register from that,” he said. “It takes a quick cheek swab and you drop it off at the post office, and they register you with their bone marrow registry. If you end up being a match for a patient in need, they will call you. You can possibly save someone’s life.”

Email Soren Ghorai at sghorai@eastsideprep.org for further information about SAMI, becoming a volunteer or donor or hosting an event.

— By Nick Ng