ABMDR Details Inside ARMENIAN BONE MARROW DONOR REGISTRY SPRING 2011 Newsletter MESSAGE FROM THE PRESIDENT His Holiness Karekin II joins However sharp my wounds or drained of blood or orphaned, my yearning heart turns there with love. the life-saving mission of the ABMDR Every time I learn of another Armenian seeking the ABMDR’s help, these words of Charents fill me with resolve. There are hearts the world over yearning for a bone marrow transplant, turning to us to find a match. As our registry grows, my hope is that in the future we will be able to fulfill a promise for each and every one. Until that time, we will continue to fulfill the promises we have made. We promised to register 20,000 donors in our first decade. We surpassed that number. We promised to establish a Stem Cell Harvesting Center in Yerevan. We opened one of the few in the Caucasus, and in less than a year it has enabled a life-saving transplant. We promised to reach out to all Armenians worldwide. We now have a presence in 13 countries. And we have promised to save lives. We have facilitated 12 transplants. As we enter our second decade, we have more promises to make and fulfill. We promise to add 10,000 more donors to the Registry this year. We’re halfway there already! We have earned the honor of being chosen as the first registry in the Caucasus to host a meeting of the prestigious European Federation for Immunogenetics later this year. We promise to work toward our goal of a transplant center in Armenia. We have launched a campaign to do this. Since its inception, the ABMDR has been a beacon of hope and a crucible for our people in the homeland and the diaspora to come together and forge a resource for all who suffer from life-threatening blood diseases. Turn to us, yearning hearts, and I promise we will respond with determination, and with love. Frieda Jordan, PhD, President MESSAGE FROM THE CHAIR There are many issues that divide us. How inspiring it is to be part of an organization that unites us, irrespective of origin, denomination, or political affiliation. The ABMDR draws Armenians from all walks of life and convictions, inspiring them to work together toward a higher good. His Holiness Karekin II, Supreme Patriarch and Catholicos of All Armenians, registering Mark Geragos, Esq. Chairman of the ABMDR Board of Directors as a stem cell donor at his residence in Echmiadzin, Armenia. “This is an important day filled with blessings. I encourage MESSAGE FROM THE HON. CHAIR the citizens of Armenia, as well as Armenians throughout the The ABMDR has a vital presence in the Caucasus, especially through the Stem Cell Harvesting Center. The diaspora, to actively participate in the work of the registry, with next logical step is the creation of a transplant center the understanding that it might be one of us who can give the gift in Armenia, to provide life-saving services to patients throughout the region. of life. I express my gratitude and appreciation to all those who are supporting the Armenian Bone Marrow Donor Registry.” Dr. Bella Kocharian Former First Lady of Armenia, His Holiness Karekin II Honorary Chair of the ABMDR SPONSORS This publication was made possible by generous contributions from: Glendale Adventist Medical Center ABMDR News 11.indd 1 6/9/11 4:03 PM ask the doctor More donors, a greater chance of saving lives An interview with ABMDR Executive Director Dr. Sevak Avagyan During the ABMDR’s tenth-anniversary celebrations last year, it was announced that you sought to add 10,000 additional potential donors to the Registry. Why is this important? Only 30% of patients in need of a stem cell transplantation will find a match in their own family. The others rely on unrelated donors to be their match. It is urgent that we develop, expand, and maintain a registry with a large enough number of unrelated donors to successfully cover the need of transplantations among ethnic Armenians. Right now there are 1,696 patient families seeking a donor match from among our registry. Sevak Avagyan, MD, ABMDR Executive Director. It is often said that joining and supporting the Registry is not only a response to current families in need, but an investment in one’s own family. What does that mean exactly? I don’t know of any family that has not been touched by cancer. In fact, the probability of a man or woman It is urgent that getting the disease is 30-50%, respectively. Every four minutes someone in the U.S. is diagnosed with leukemia, which is the most common cancer among children. In Armenia leukemia accounts for 40% of we maintain a childhood cancers. So, yes, while each one of us is sympathetic to others who are currently suffering, we also know that the likelihood of our own family being in that position sometime in the future is very high. Joining registry large the Registry, helping as a volunteer, donating money for tissue typing: these are all altruistic activities, but also potential investments in your own family — in this generation or the next — when your time of need comes. enough to It sounds like an insurance policy. successfully Yes, that is a good analogy. When you give us your cheek swab, when you help current families in need cover the need of with recruitment drives, when you support our fundraising events every year, you are essentially “paying an insurance premium” for your family’s future. I know we don’t like to anticipate life-threatening illness, but it transplantations is a reality that must be acknowledged and addressed. among ethnic This is a good way to think about it: most of us want to help others, but it is human nature to be particularly passionate about helping those closest to us. Being involved with the ABMDR is an Armenians. investment in ourselves, and in our extended “Armenian family.” So how are we doing with our drive to register 10,000 more donors? Since the announcement last year, we have already reached the halfway mark! This, along with our recently established Stem Cell Harvesting Center, our strong position in the international medical community, and our global reach, bodes well for a productive and successful year ahead. And we will be poised to achieve our next goal: a stem cell transplantation center in Armenia. Help us save lives. Support our efforts to establish a bone marrow transplant center The staff of the ABMDR’s HLA Typing Lab (Yerevan) with Dr. Mihran Nazaretyan (second from left) and Dr. Sevak in Armenia. Avagyan (fourth from left). ABMDRNewsletter | SPRING 22011 ABMDR News 11.indd 2 6/9/11 4:03 PM Toward the goal of establishing a bone marrow transplant center in Armenia An interview with ABMDR Medical Director Dr. Mihran Nazaretyan We know that the ABMDR hopes to see the establishment of a transplant center in Armenia in the very near future. Why is this important? While the ABMDR’s Stem Cell Harvesting Center is a singular healthcare achievement in the history of Armenia, the feasibility of saving lives through bone marrow transplantation still eludes the vast majority of patients in the country. As a result, patients suffering from potentially fatal blood-related diseases must travel abroad to Dr. Mihran Nazaretyan, receive the life-saving transplants they so desperately need. Most residents of Armenia cannot afford even a MD, PhD, MPH, fraction of the costs, which include travel, bone marrow acquisition, and transplant-procedure expenses. ABMDR Medical Director. This means that an alarming number of patients requiring a transplant are unable to receive treatment and therefore may face losing their lives. What will it take to have a transplant center in Armenia? Two things: the financial support as well as full backing and logistical go-ahead of the Armenian government. We must begin with seed funding from the government. I am confident that with a green light from the government, and an initial subsidy, the additional funding will come, as we so gratefully experienced with the campaign for the Stem Cell Harvesting Center. Has there been progress? Currently the ABMDR is lobbying the government for its support of the transplant center. We are also reaching out to our benefactors, and the public at large — in the diaspora and Armenia alike — to help us in these efforts. We must have the political will to be able to move forward with this initiative. Once the Armenian government stands firmly behind the project and initial funding is secured, we know we can mobilize our long-standing partners — and new ones — to marshal support through a variety of sources and conduits including fundraisers, corporate grants, and individual philanthropic gifts, in addition to a government subsidy. Any final thoughts? The creation of a bone marrow transplant center in Yerevan would mean a great leap forward for Armenian healthcare. At long last the Armenian public would have access to locally available, affordable, and life-saving bone marrow transplantation. Imagine the prospect of a world-class medical facility in the heart of Armenia, helping save lives and bringing the gift of hope to thousands in the homeland and beyond. The time to act is now. Having a bone marrow transplant center in Armenia is important for so many reasons Going through the transplant process is a very intensive, emotionally trying time for the patient and the family. If there are no facilities in the patient’s own country, there is the added stress of traveling to an- other country, where there are language and cultural barriers, and the isolation of being away from the support base of extended family and friends.