National News

Jul 13, 2013 12:13 PM by katc

Essence Fest drive grows bone marrow registry

Partying with a purpose is the Essence Festival's signature mantra and Delete Blood Cancer said the festival's service-oriented scope helped them increase the number of African-Americans and other minorities on its bone marrow registry during the event last week.

Organizers said the group registered 600 people during the four-day festival, held annually on Fourth of July weekend.

July is African American Bone Marrow Month, and Delete Blood Cancer also is teaming up with the NAACP annual convention, which convenes Sunday in Orlando, Fla., and the Indiana Black Expo Summer Celebration, which meets next weekend in Indianapolis, to continue efforts to grow the registry.

"An African-American is so much less likely to find a match than any other minority because less people in that community donate," said Greg Daniels, a spokesman for the group.

"Currently only 7 percent of those registered as bone marrow donors are African-American and only 66 percent of African American patients can find a match," he said.

The low numbers and a greater genetic diversity in that population make it harder to find one match for a patient, Daniels added.

"We're working with celebrities, including singers Jill Scott and Katy Perry, to help spread the word about becoming a donor," he said.

Delete Blood Cancer says everyone is susceptible to blood cancers such as leukemia, myeloma and lymphoma or to blood diseases such as sickle cell, which affects 1 in 500 African-Americans. Donor drives such as those held at Essence can help patients like 11-year-old Tiffany Glasgow, who suffers from sickle cell and ulcerative colitis.

In an interview on a public affairs program for WABC-TV in New York, Tiffany said she's been dealing with the disease and its complications since she was 5.

"I'm in pain a lot," she said.

Her four brothers and sisters also suffer from sickle cell.

She said she dreams of being a chef and a doctor "to help people like me."

Her mother, Siloane London, said a bone marrow transplant is probably the only thing that would help improve her daughter's condition.

"She's dealing with more than one complication. ... Some of her organs already are being affected," London said, noting a recent procedure to unblock ducts to the child's liver.

"At this point the only way is to replace her whole blood system," said Katharina Harf, who led the expansion of Delete Blood Cancer in the United States in 2004.

Harf's father, Peter, founded the organization in 1991 with Dr. Gerhard Ehninger after her mother was diagnosed with an acute form of blood cancer and needed a bone marrow transplant.

With the help of family, friends and volunteers, Peter Harf recruited 68,000 donors in Germany in a year in an effort to find one for his wife, Mechtil. She died the year the bone marrow organization launched.

Since then, the organization has registered more than 3.5 million people worldwide and is one of the largest bone marrow donor registries in the world.

Becoming a donor is relatively simple. After filling out a form and having the inside of the cheeks swabbed for tissue, any healthy adult age 18 to 55 can register. Delete Blood Cancer also offers free swab kits online so potential donors can administer the test at home.

"Getting swabbed only takes a few moments, but saving a life as a donor lasts a lifetime," said Chris Kuthan, Delete Blood Cancer's CEO.

Boxing great Evander Holyfield's son, Evander Jr., registered and turned out to be a match for a 17-year-old girl of a different ethnicity, Daniels said.

"It's very rare that you will even become a match, but if you do, just think of the good you could do," he said. "The only thing we ask is that you be committed if you do get that call."

If a match is found, a donor would know within four to six weeks.

Daniels said one of their missions also is to dispel the myths associated with marrow donation.

"There are two procedures, and both are relatively painless," he said. "One involves donating much as you would platelets through the blood stream; the other is in an outpatient procedure through the back of the pelvic bone."

Whatever the process, Daniels encouraged people to "put themselves out there."

"It's a wonderful thing to do," he said. "And knowing that something so simple could mean so much and give someone life gives you an amazing feeling."


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