DNA MATCH A RARE FIND

Glendale News Press
April 8 2010
CA

Nationwide registry hopes to track more donors who could save lives.

Inspired by a 4-year-old girl in need of a transplant, more than 100
visitors became a part of the Armenian Bone Marrow Donor Registry
during a drive Wednesday at Glendale Memorial Hospital.

Registry drives have taken place nationwide over the last week for
the child, Charlotte Conybear, of Philadelphia, who suffers from
aplastic anemia.

The condition is a product of an autoimmune disorder in which
Charlotte’s white blood cells are attacking her bone marrow, said
Jeff Conybear, her father.

Although Charlotte is only a quarter Armenian — her mother, Ellen
Jerrehian, is half Armenian — doctors quickly surmised that she
was having trouble finding a match for a transplant because of her
Armenian heritage, Conybear said.

But the worldwide registry of Armenian bone marrow donors is small,
at about 15,000 for a population of about 10 million, said Frieda
Jordan, president of the registry.

Conybear connected with the registry to reach out for help through
drives in San Francisco, Boston, Philadelphia and Washington with
the hope of increasing the donor pool, he said.

"Whether they help Charlotte or not that’s great, but they might help
someone else," he said.

The visitors who dropped into the hospital’s auditorium for the
registry drive filled out a form, then provided six mouth swabs that
would be used to "fingerprint" their DNA for the registry, Jordan said.

Nyree Arabian, of Glendale, had heard about the drive through church
announcements and e-mails from her children’s private school, she said.

"I have children and I know how difficult it must be for the family,
and to be able to help in any way would be the best thing I could do,"
Arabian said.

Like other minority populations, people of Armenian heritage have a
difficult time finding a match for transplants, Jordan said.

That makes registry drives important because they expand donor pools
and could help provide life-saving solutions for patients in need,
she said.

Although the Armenian Bone Marrow Donor Registry shares its information
with the National Bone Marrow Donor Program Registry and others that
help patients find potential matches for transplants, the combined
databases still have low numbers for Armenians and other minority
groups, she said.

"A lot of patient can’t find a match," she said.

That was the case for Glendale resident Razmik Moghadasian, whose
9-year-old son, Biurad, was in need of a marrow transplant when he
died of leukemia in 2007, Moghadasian said.

Moghadasian had partnered with the Armenian registry to organize a
donor registration drive in the same hospital auditorium prior to
his son’s death and had succeeded in drawing 800 people, he said.

"We found a donor for him, but unfortunately it was too late and he
didn’t make it," he said.

Although his son died, an expanded registry could help, said
Moghadasian, who helped to register donors Wednesday.

"It’s so important," he said. "I consider this a kind of insurance for
other kids because you never know when this thing is going to happen."