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Bone Marrow Donor Drives for 4-Year Old Armenian Girl Held on Easter Sunday at Armenian Churches throughout the Country

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The Armenian Mirror-Spectator
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By Lisa Manookian
Special to the Mirror-Spectator

PHILADELPHIA — Charlotte Conybear is a charming 4-year-old girl who suffers from aplastic anemia, a life-threatening disorder that results in the failure of her bone marrow to produce adequate blood cells. She is currently receiving transfusions and may be in need of a bone marrow transplant. As of yet, there are no matches for her among her family and nor on either the National Bone Marrow Registry or the Armenian Bone Marrow Donor Registry.

As bone marrow matches are dependent on genetics, ethnicity is a key component to finding a match.

The tide may turn, as on Easter Sunday, 12 Armenian churches throughout the country held bone marrow drives in hopes that someone out there will be able to give little Charlotte a new lease on life.

Charlotte Conybear’s uncle, Dean Jerrehian, said: “It’s amazing how the Armenian Church drive came about. We held a small registration drive in conjunction with a trade show I was attending in San Francisco in January. Louise Johns, from San Francisco, who also had aplastic anemia — and received a life saving bone marrow transplant — heard about the drive and, even though she had never met Charlotte or our family, decided to “pay it forward” and hold a drive for Charlotte at her pilates studio. At that drive, Aline Aghababian, an Armenian-American, who also does not know anyone in our family, heard that Charlotte was more likely to find a match among people of Armenian descent and organized registration drives at all the San Francisco Armenian Churches on Easter Sunday. Once Aline got the ball rolling, we reached out to Armenian churches in Philadelphia, Boston, Washington and Los Angeles.”

Volunteers from each parish conducted the drive following Easter Sunday services. Participants answered a few questions, filled out a form and swabbed their cheeks with something resembling a long-stemmed Q-tip. At St. Sahag & St. Mesrob Armenian Church in Wynnewood, Penn. — where little Charlotte’s great-grandfather, Aram K. Jerrehian Sr. was a co-founder and godfather, more than 87 people registered. Volunteers bar-coded the forms and Q-tips early in the morning, well prepared for the onslaught of support that followed immediately after services.

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The participating churches, in partnership with the Be the Match Foundation (the new name for the National Bone Marrow Donor Program Registry) and the Armenian Bone Marrow Donor Registry, were: St. John Armenian Apostolic Church (San Francisco); St. Gregory Armenian Apostolic Church (San Francisco); Calvary Armenian Congregational Church (San Francisco); St. Vartan Armenian Apostolic Church (Oakland); St. Andrew Armenian Apostolic Church (Cupertino); St. Mary’s Armenian Apostolic Church (Washington, D.C.); St. Stephen’s Armenian Apostolic Church (Watertown); Armenian Martyrs’ Congregational Church (Havertown); Holy Trinity Armenian Church (Cheltenham); St. Gregory the Illuminator Armenian Church (Philadelphia); St. Mark’s Armenian Catholic Church (Wynnewood) and St. Sahag & St. Mesrob Armenian Church (Wynnewood).

St. Gregory Armenian Church in Pasadena, Calif. held the drive on Palm Sunday and, to accommodate the many Armenians in the Los Angeles area, Glendale Memorial Hospital held a drive for Conybear on April 7. The end result was an incredible outpouring of solidarity as more than 800 potential donors joined the registry.

Additional drives are being planned in New York City, Sacramento, Boston and again in Pasadena and Philadelphia.

Overwhelmed by the generosity of others, Jerrehian stated, “So often you hear bleak stories of crime, war and tragedy, you almost lose hope for the future, but then something like this happens where hundreds of strangers come out to help Charlotte, a little girl they will likely never meet. It really renews your faith in the basic goodness of people.”

Charlotte Conybear’s mother, Ellen Jerrehian Conybear, was very grateful: “I really cannot express how touched we are by this outpouring of support and help. At times we have felt alone in dealing with Charlotte’s health, but I now know that is not true. There are many people — family, friends and strangers — who are pulling for us.”

Her father, Jeff Conybear noted: “I think it is so appropriate that these drives occurred on Easter Sunday. The day of the celebration of the Resurrection of Christ is the perfect day to take action and help give new life to people like Charlotte, who desperately need bone marrow transplants. Thousands of people need bone marrow donors to make their life-saving transplants possible. They depend on ordinary people – most often a stranger who has the power to be a real hero and save the life of someone they have never met.”

The Armenian Mirror-Spectator

The drive was covered by ABC, NBC and CBS news affiliates in Philadelphia, Los Angeles and San Francisco and local Philadelphia papers. It was supported by not only members of the Armenian community, but non-Armenians as well. At Holy Trinity Armenian Church in Philadelphia, the parish’s secretary, who is not Armenian, came to Easter services with members of her family. Another woman too old to donate was young at heart — an author of children’s books, she gave little Charlotte Conybear a book as a gift. At the Calvery Armenian Congregational Church in San Francisco, a cancer survivor — thanks to a bone marrow transplant — gave an inspirational message during the service.

For many patients suffering from blood diseases, stem cell transplantation is the only life-saving step. This requires a donor whose tissue type matches that of the patient. Armenians have a unique genetic makeup. Therefore, Armenian patients are much more likely to find matches within their own ethnic group. The Armenian Bone Marrow Donor Registry (ABMDR) is a registry of more than 15,000 Armenian donors from all over the world, with the aim of serving Armenian patients throughout the world. Because half of the Armenian population lives outside the homeland, finding compatible matches for Armenian patients requires a registry that encompasses all Armenians globally, so that an Armenian patient in the US may find his life-saving match in a small village in Karabagh, or a child in Iran may find a match in Spain. The more Armenians who register, the more opportunities the ABMDR has of creating matches and saving lives. The ABMDR has two headquarters, one in Yerevan, and the other in Los Angeles, with satellite offices and representatives in more than 13 countries, and a tissue-typing lab and stem cell harvesting center in Yerevan.

Since its inception in 1999, the ABMDR has facilitated 800 matches and nine stem cell transplants. In the vast majority of cases (75 percent), bone marrow donations are no more painful than giving blood as marrow cells are taken from the blood, rather than directly from the marrow.

Upcoming bone marrow drives will be held on Sunday, April 18 at Forty Martyrs Armenian Church, Santa Ana, Calif., 11:30 a.m. to 2 p.m.; St Mary’s Apostolic Church, Glendale, Calif., 11:30 a.m. to 2 p.m.; St. Garabed Apostolic Church, 11:30 a.m. to 2 p.m.; Holy Martyrs Armenian Apostolic Church, 11:30 a.m. to 2 p.m.; and on April 24, at the Genocide Memorial Bicknell Park, Montebello, 10 a.m. to 2 p.m.

For more information on the Armenian Bone Marrow Donor Registry, visit http://www.abmdr.am.

For more information on the National Bone Marrow Program, visit http://bethematch.org. For more information on bone marrow drives to assist Charlotte Conybear, visit http://www.charlottesmatch.org.

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