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| About AABMF |
Current Issues:
At present there are 125 individuals suffering from generally incurable diseases like Leukemia, thalassemia, aplastic anemia and other hematological malignancies in USA and the number is increasing with each passing days.
Most have not found a perfect bone marrow match to initiate a transplant. Caucasians in general, quickly find a perfect bone marrow match when compared to those that are
diagnosed within the South Asian Community. According to latest statistics from NMDP (
National Marrow Donor Program ), there are over 3.5 million Caucasians registered in the marrow registry as compared to only 80,000 South Asians.
Many lives are lost every year due to the lack of matching donors or complications arising from partial match transplants. With statistic like this, it is not surprising to realize that India's cancer survival rate is only half of that of developed countries.
Currently The National Indian registry contain only 1200
registered donors. Many individuals and family are only tested for the purposes of their own family and many individuals are not even aware of the benefits of bone marrow donation. It is very difficult for parents/families to search for perfect bone marrow donor match without centralizes data bank of bone marrow
donors registry. Without proper funding and awareness, this problem will continue.
Another concern is that the cost of an HLA typing test/ transplant is expensive,
therefore generally, not
affordable by
an individual.
In order for India to become a healer of its own people, it must create a national sharable registry in India that can combine
the resources of local hospitals and Health care providers. It must provide awareness and education to the masses. The Foundation's proposal aims to provide that solution, to save lives and create stronger and more powerful nation by saving
as many people as possible who have been diagnosed with these
hematological malignancies on a global scale.
Vision:
With over 700,000 cases of cancer in India and the need to find a suitable match for 125 South Asians in the USA, The Foundation is proposing an establishment of marrow donor registry to be designed on a national level for the sole purpose of saving lives. In order for a successful venture, The Foundation has approved to undertake projects, to prepare project proposals for funding and through a joint venture with NGOs and Non Profit Organizations in India, to aim to provide a long standing method for saving lives based on the following sound footings.
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To bring awareness in the general population about the need for a registry and its potential for providing curative therapy for otherwise fatal diseases.
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To build a trusted bridge between the dreams and aspirations of individuals who care about India and their realization.
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To provide a secure channel for philanthropic funding in the USA and its effective utilization in India in partnership with the best NGOs, Foundations and Non Profit Organizations.
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To build a professional organization that is secular, transparent, credible and accountable for of its activities. |
Mission:
To provide centralizes and anonymous information on the HLA phenotypes and other relevant data to unrelated bone marrow donors and cord blood units and make this information accessible to the physicians of patients in need of a haematopoietic stem cell transplant. The registry would be formed through volunteer donors found through education, awareness and marrow drives in India. Hospitals and other Healthcare institutions are currently providing
HLA typing/testing. This localized form of testing can be combined through a national marrow donor registry project, providing a central data depository which conforms to The World Marrow Donor Association International standards, EFI standards, ASHI standards, ASEATTA standards and other agencies with similar standards and accreditation process.
