National Marrow Donor Program (NMDP) was created in 1987 to provide marrow transplants to patients in need. The NMDP has long considered the South Asian community an invaluable source of educated individuals who could be motivated to saving the lives of leukemia and blood cancer patients. In 1994, the NMDP launched a national initiative to raise awareness and galvanize volunteer marrow/blood cell donor recruitment within Asian/Pacific Islanders (A/PI), including South Asians.
History of the NMDP
In 1979, 10 year old Laura Graves received the first ever unrelated transplant for leukemia. The Graves family set out to create a national registry by working together with other patient families, transplant physicians and legislators. In 1986 blood and platelet donors were recruited to the marrow donor registry. The first computer program was developed to match patients and unrelated donors while physicians established matching and transplant criteria. At this time, Admiral E.R. Zumwalt Jr. lobbied Congress to establish a national registry on behalf of his son, Elmo, who needed a transplant to treat lymphoma. With funding from the U.S. Navy, which had previous experience with bone marrow transplantation, the National Marrow Donor Registry was established in 1987. During this year, the first staff was hired to and shared an office with the American Red Cross in St. Paul, MN. This was also the year when the NMDP’s first transplant took place as Diane Walters of Wisconsin donated marrow to 6 year old Brooke Ward of North Carolina.
History of SAMAR
“I want to live!” was the anguish cry of a teenager with blood cancer. This is what inspired Rafiya Peerbhoy Khan in 1992, to start thinking about what she could do to help people like that young boy. 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 HLA and Certified Histocompatibility Specialist (genetic testing for finding matched donors). She had become aware that there were not enough minorities within the registry, of which South Asians were the least. It was around that time the NMDP staff had visited MSKCC to see the working of the HLA laboratory and the transplant department. She decided to take matters into her own hand 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.
It was at this time, South Asian Marrow Association of Recruiters, SAMAR was founded. Directors, staff and volunteers were in place to begin this new era in volunteer marrow/blood stem cell recruitment. Fliers were prepared and a volunteer handed out the information at a local university’s student event to everyone in attendance, but unfortunately no one paid attention. 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 and events. This was the beginning of SAMAR’s long lasting commitment to patients in need of marrow/blood stem cell transplants worldwide.
On August 18th 1995, SAMAR was officially 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 also received it’s tax exempt status a few months before from the IRS. This was also the time when SAMAR established a patient and family support group, the first of its kind.
In 1996, SAMAR organized its first patient/donor meeting, which had unsurpassed 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 graced with numerous awards, citations and proclamations from leading organizations, the NMDP and other community organizations.
As early as 1994, Rafiya initiated the idea of a national marrow registry in India, as her vision was that there would be an endless availability of marrow 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.
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.