In January 1999 Alique Topalian was diagnosed with leukemia. Knowing that she might need a bone marrow transplant, and unable to find a matching donor in existing bone marrow registries of the world, her parents contacted Dr. Frieda Jordan, then Head of Laboratory Services at the Anthony Nolan Institute, one of the world’s leading bone marrow registries. Fully aware of the unique genetic makeup of ethnic Armenians that made it nearly impossible for Armenian patients to find matches among non-Armenian bone marrow registries, Dr. Jordan approached Dr. Sevak Avagyan, and together they spearheaded the creation of the Armenian Bone Marrow Donor Registry, a registry of volunteers from all over the world to serve patients all over the world.
The ABMDR was founded in 1999 as an independent, non-governmental, not-for-profit organization, whose mission is to ensure that every ethnic Armenian struck with a life-threatening blood-related illness is able to find hope for long-term survival through the identification of a genetically suitable bone marrow match.
Dr. Bella Kocharyan, then first lady of the Republic of Armenia and herself a medical doctor, jump-started recruitment in Armenia when she joined the registry as the first volunteer donor. Recruitment continued in Karabagh, and Los Angeles, California, followed by Iran, Lebanon, Canada, Syria, Greece, Bulgaria and Jordan. During this time, ABMDR established a firm presence in all 10 regions of Armenia and continued its recruitments across the US to Massachusetts, Nevada, Arizona, New York, Pennsylvania, Washington D.C., and most Armenian communities in Southern and Northern California. ABMDR operates recruitment centers in Los Angeles, Boston, Iran, Lebanon, and Syria, and relies on a network of volunteers in the remaining communities.
In 2003, barely three years into its existence, ABMDR facilitated its first transplant. The second, third, fourth transplants took place in 2004, and by 2011, ABMDR had facilitated a total of 12 transplants.
In February 2005 ABMDR opened its “Mariana Kazarians” center in Los Angeles, and in 2009, its state-of- the-art Stem Cell Harvesting Center in Yerevan. It has already performed its first harvesting for a patient in Belgium. As the only center of its kind in the region, the Center not only brings the life-saving procedure of stem cell transplantation within the reach of many more patients, but it will also anticipates playing a vital role in the treatment of other diseases such as many cancers, diabetes, and heart ailments.
ABMDR’s tissue typing lab is equipped with cutting edge DNA technologies and is run by a highly trained staff. It is the first laboratory of its kind in the Commonwealth of Independent States (former Soviet republics) to receive accreditation from the highly respected European Federation of Immunogenetics (EFI).
In 2007, ABMDR forged a partnership with Dana Farber Cancer Institute in Boston, and soon after joined the World Marrow Donor Association (WMDA), Bone Marrow Donor Worldwide (BMDW) and the National Marrow Donor Program (NMDP), and shares database information with registries around the world.
In its first 10 years of operation, ABMDR has made tremendous achievements. To date, the registry has recruited over 20,000 donors, mostly young males, in 13 countries across three continents, identified 1,696 patients, found 1,419 potential matches, and facilitated 12 bone marrow transplants.