NEW BONE MARROW REGISTRY TARGETS ARMENIAN DONORS.

Byline: Helen Gao Staff Writer

GLENDALE - When 4-year-old Alique Topalian was diagnosed in 1998 with acute myeloid leukemia, her mother, Michele Seyranian scoured the country - and the world - to find a match for a bone marrow transplant that could save her life.

``She is the only child. There wasn't a sibling who would be a match. We did a pretty exhaustive search through families and friends, but there is no match for her,'' Seyranian said.

For people of Armenian descent - as for other insular ethnic groups who rarely marry outside - their best chances are to find matches from unrelated people of their own group. But at the time, there was no Armenian bone marrow registry.

But today, thanks to the efforts of Frieda Jordan of Glendale, an Armenian bone marrow registry has been launched in Glendale and Armenia.

Jordan, who is also of Armenian descent, decided to take on the cause after she was contacted by Seyranian and other Armenian families for help in finding bone marrow matches.

``Not even once were we able to find a match for Armenian patients,'' said Jordan, who previously worked for the Anthony Nolan Bone Marrow Trust in London and now is a partner in a laboratory in Glendora. ``That kind of frustration led me to think we need to have our own bone marrow registry.''

With Alique's cancer in remission after chemotherapy, Seyranian has joined Jordan and others in building the registry.

``As a mother who sat there night after night praying for God to spare her daughter's life, I vowed I would never let another mother go through what I went through,'' said Seyranian, who lives in Cleveland.

In the past year, the registry signed on 2,500 donors. Glendale Memorial Hospital is helping to register donors locally.

At the same time, the registry's board of directors has set up a lab in the Armenian capital of Yerevan to recruit donors as well. Its goal is to recruit 10,000 donors in four years.

Because the registry is still relatively small, it has not yet been able to provide a match for any patients. But already, it has processed some 20 patient referrals.

Currently, a large portion of registered donors in the world belong to northern European populations and as a result, finding a suitable donor for an Armenian patient within that pool is often very difficult because of the significant differences in genetic makeup.

The survival of a patient depends largely on finding a match, said Jordan. Incompatible matches cause complications that could result in death.

``According to statistics, only 30 percent of the patients can find compatible matches within their own family members,'' she said. ``The other 70 percent ... have to find donors within unrelated population.''

Besides Glendale and Yerevan, the registry's recruiters have traveled to New York, Boston and even France - wherever there are large populations of Armenians - to reach out to potential donors.

In Armenia, the effort has won the support of first lady Bella Kocharian, a doctor who serves as honorary chairwoman.

Jordan is in Armenia this week to celebrate the first anniversary of the registry. The Armenian government is considering naming Jan. 8 for bone marrow donors.

``It's caught on very well in Armenia. To our surprise, people are so willing to help and come forward,'' said Jordan.

In addition to Glendale Memorial Hospital, the Glendale Community Foundation has also committed to help the registry through a three-year campaign to raise $30,000. Many people who work for the registry are volunteers.

To register as a donor, a person simply has to donate a small amount of blood. All blood samples are tissue-typed at a cost of $150 each in order to create profiles of donors' genetic makeup. The information is then stored in a computer database.

When the registry receives a request for bone marrow donation, it would compare the patient's genetic makeup with those of the donors in the database. If matches are found, donors would be contacted to donate their bone marrow after further compatibility testing has been done.

Donating bone marrow has no adverse effect on the body because it naturally replenishes itself, said Jordan.

To become a donor, contact Glendale Memorial Hospital at [phone]. Donations can be sent to the Armenian Bone Marrow Donor Registry Charitable Trust, 347 West Stocker St., No. 208, Glendale CA 91202.

CAPTION(S):

photo

Photo:

Frieda Jordan of Glendale has helped launch the Armenian bone marrow registry that operates in Glendale and Armenia.

L.J. McAllister/Special to the Daily News