To create an informed society of individuals who would make a conscious decision to become committed volunteer marrow/blood stem cell donors and be available to donate.
Holding a clear focus, SAMAR’s mission is to facilitate a process of education, tissue typing and donor registry enrollment as a means to ensure that no global citizen is ever denied a lifesaving marrow/blood stem cell transplant solely due to the lack of a genetically specific donor.
South Asian Marrow Association of Recruiters Inc.(SAMAR) is a 501(c) 3 community based Network partner of the Be The Match Registry and managed by the National Marrow Donor Program.
SAMAR was founded in 1992 by Ms Rafiya Peerbhoy Khan
We serve patients who need a hematopoietic stem cell transplant for leukemia, fatal blood disorders, and other conditions requiring a cellular transplant for a cure. Our focus is the South Asian community (people from India, Afghanistan, Bangladesh, East Africa, Guyana, Nepal, Pakistan, Sri Lanka, and West Indies) and other diverse groups, such as African Americans, Asians/Pacific Islanders, Hispanics, and American Indians.
Although SAMAR was founded to reach out to register the severely underrepresented South Asian ethnic group, we can utilize our knowledge of our culture, religion and diverse backgrounds (to be rewritten) to specialize in their care.
It is devastating to note that every three minutes someone is expected to be diagnosed with leukemia, lymphoma, or a fatal blood disorder. Every 9 minutes someone dies of blood cancer/disease. This means 148 people die each day. (Link http://www.lls.org ) Currently 14,000 patients are searching for a matched donor from the U.S. registry. Together we can take a stance and help these patients to find a cure. (Link https://bethematch.org )
“I WANT TO LIVE, what can you do for me?!” was the anguish cry of a teenager who approached Ms. Rafiya Khan when she was an employee at MSKCC. This is what inspired Rafiya Peerbhoy Khan, in 1992, to start thinking about what she could do for that young man and many others like him. As a mother, she put herself in the place of the young boy’s mother. As Rafiya did, every mother would have tried to figure out a way to help that boy find a cure.
Peerbhoy Khan’s association with the National Marrow Donor Program was through Memorial Sloan Kettering Cancer Center and New York Blood Center where she had served as an Certified Histocompatibility Specialist (HLA genetic testing for finding matched donors). She had become aware, through her interaction with the NMD, that there was a dire shortage of diverse groups within the registry, of which South Asians were the least. It was around that time the NMDP staff had visited MSKCC to see the work of the HLA laboratory and the transplant department. She decided to take matters into her own hands and decided she would register volunteer marrow donors through the New York Blood Center.
Peerbhoy Khan’s initial decision was to reach out to the South Asian community and build awareness for the need of volunteer marrow donors, especially since more patients from the community were introduced to her. This was the only organization centered for creating awareness and registering South Asian marrow donors to increase representation in the national registry and provide an equal chance for South Asian patients.
It was at this time, South Asian Marrow Association of Recruiters, SAMAR was founded. Directors, staff and volunteers were put in place to begin this new era in volunteer blood stem cell recruitment. Information materials were prepared to be distributed at a university’s student event to everyone in attendance, unfortunately no one paid attention. However, SAMAR did not give up.
In July of 1992, the first major and successful marrow registry drive was held at the TANA conference where 200 volunteer marrow donors were registered. This was an encouraging beginning which would not have occurred had it not been for the support of our volunteers.
This catapulted the efforts and spurred them on to contact various South Asian conferences, conventions, university clubs. This was the beginning of SAMAR’s long lasting commitment to patients in need of blood stem cell transplants worldwide.
On August 18th 1995, SAMAR was registered as an official recruitment group with the National Marrow Donor Program. Prior to this, SAMAR worked as volunteers of the New York Blood Center. SAMAR had its first awareness event to promote the mission of the organization. It was attended by the media, officials from the United Nations and many community leaders. SAMAR initiated a patient and family support group, the first of its kind, where families and patients interacted to seek solace from each other.
In 1996, SAMAR organized its first patient/donor meeting, which had surpassed publicity with print and TV media coverage. Since then, two other such patient/donor meetings along with many other events and functions have been conducted. SAMAR has been honored with numerous awards, citations and proclamations from community organizations and leading organizations, such as the Outstanding Achievement for Highest Minority Percent of Goal from NMDP.
As early as 1994, Rafiya initiated the idea of a national blood stem cell registry in India, as her vision was that there would be an endless availability of blood stem cell donors and cord blood samples for the world. Several sources for financial help were tapped, many top oncologists were contacted and she visited functioning laboratories to suggest upgrades in their work. Today there are five official and growing registries in India, which are interconnected with the U.S. registry. It is a pride Peerbhoy Khan takes in her work and achievements.
SAMAR devised and pioneered a variety of effective education methodologies based on cultural sensitivities of this diverse community. SAMAR has the unique distinction of having successfully registered the largest number of South Asians in the world for the Be The Match Registry.
SAMAR was conceived in adversity, nurtured with compassion and is engaged in an eternal quest of hope for leukemia patients. Our slogan, “Bring a smile back to life”, is a testament to our enduring commitment to save lives. Our branding Swab to Cure carries the message of your involvement and commitment to the patients.