After 11-year-old Icla da Silva was diagnosed with leukemia in 1989, her family sold everything and moved from South America to New York to find a bone marrow donor for her.
Icla's best hope for a match was a donor of the same race, but her family never found one. She died at the age of 13.
Even after Icla was gone, her family didn't stop trying to recruit bone marrow donors.
The Icla da Silva Foundation is now the largest Hispanic recruitment group for the National Marrow Donor Program. Last year, the foundation found matches for 12 people like Icla, whose best chance for life was a bone marrow transplant.
"It's hope that we provide," says her brother, Airam da Silva, executive vice-president of the foundation. "Hope that we couldn't find when we came here."
Despite the foundation's efforts, the number of Hispanics registering as potential donors "has flat lined," says Steve Lovelace of the National Donor Marrow Program.
Hispanics are still underrepresented on the bone marrow donor registry, as well as in umbilical cord blood banks, another source of life-saving stem cells. Neither should be confused with embryonic stem cells, which are the subject of controversy because they are taken from embryos.
Because stem cells have the potential to turn into specialized cells, they can be used as a kind of repair kit for the body.
Stem cells are already used to treat dozens of diseases, and "that's the tip of the iceberg," says Dr. Robert Hariri, president of LifebankUSA, which runs a private bank where parents can store stem cells from their babies' umbilical cord blood and placentas in case they're later needed by the child or a relative. LifebankUSA also runs a public stem cell bank, which parents can choose to donate to, allowing anyone to search for a match.
Dr. Hariri says LifebankUSA maintains the world's largest Hispanic cord blood stem cell bank, thanks largely to efforts to recruit donors in places like Puerto Rico.
The Inca da Silva Foundation runs donor recruitment drives at colleges, churches, consulates and businesses around the country in an effort to find matches for the diverse population it serves.
The biggest challenge, Mr. da Silva says, is education. "Our community does not know what bone marrow is," he explains. "They think we take a chunk of bone or the spinal cord."
To register as a potential bone marrow donor, all that's needed is a DNA sample taken by swiping the inside of the cheek. Donation is a simple and low-risk procedure, Mr. da Silva says.
There are two collection methods, and it's up to the transplant doctor to decide which will suit the recipient. Stem cells are either extracted from blood drawn from the donor, or from bone marrow taken from the donor's pelvis in an outpatient procedure.
Some people worry that they won't be able to take time off work to donate, Mr. da Silva says, so his foundation will make up lost pay. The foundation also covers donors' travel expenses.
The identities of bone marrow donors and recipients are confidential, but they can be put in contact if both people wish. The Icla da Silva Foundation has arranged at least a dozen meetings, Mr. da Silva says.
"Those are some of the most heartwarming moments you could ever see," Mr. Lovelace says.
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