HOW WE HELP
GENEBANDHU spreads awareness about stem cell transplants, helps patients and their families find potential donors and also supports the post-transplant recovery of patients. Studies show that the genetic pool of Indians is conserved and hence there is a higher probability of getting a match within a pool of similar country origin. Also, if a donor is found within the country, the cost of stem cells transplant drastically reduces. This initiative towards creating an Indian registry of stem cell donors will help in spreading awareness about the technology (stem cell transplantation) involved in elimination of the alarming blood disorders, leukemia, lymphoma, and developing unity across nations and across religions and galvanizing the essence of selflessness among people.
GENEBANDHU is a not for profit Non-Governmental Organization (NGO) located in New Delhi, India. The story started back in 1998, when a group of philanthropists laid the foundation of an organization named Safe Blood Organization. The main motive of the organization was to build a blood donation bank. With the gradual increase in blood disorders and their disastrous outcomes, the pioneers of the organization initiated a new project named Bharat Stem Cell in 2012. This new project was aimed at constructing an efficient database of stem cells donors of Indian origin, which would help those in need of such transplants. This gene community comprises of benevolent donors, who have committed to help patients suffering from dreadful blood disorders. This bank of voluntary donors is referred to as a stem cell registry. On 24th August, 2015, the project was renamed GENEBANDHU. The main principle of the organization intensifies feeling of trust and humanity which motivates our volunteers to provide support to those in need.
Tejveer Singh a very bright and loving child from district Hissar, Haryana had a very promising future. He was one of the top students of his school and had an ambition to represent India at Olympics as a wrestler. Unfortunately, he was diagnosed with blood cancer and his dream started to fade away in front of his eyes. He was required to undergo a bone marrow transplant in order to save his life. His family especially his mother could not believe that her beloved young son’s life was in danger. Singh family did everything possible to cure their child. A family drive was conducted to find a match for Tejveer but no one from the family matched. Their search lead them to connect with GENEBANDHU and with the grace of God, he found his voluntary unrelated stem cell donor in GENEBANDHU’s database. I feel obliged to the person who “I feel obliged to the person who saved my son’s life as we lost hope that our son would recover and come back to us” – Tejveer’s mother
Aditya Nair, a 9-year-old boy from Pune, India studies at St. Arnold Central School. He has a younger brother Arjun Nair who is 6 years old. His father Rajesh Padmanabhan Nair works with Central Bank of India and mother Roshni Nair is working as civilian in accounts dept. of the Indian Air Force. Aditya, born as a healthy child on 30 March 2005, was first diagnosed with blood cancer in November 2007. He underwent chemotherapy treatment for 3 years under Dr.Vijay Ramanan, Hematologist, Ruby Hall Clinic Pune. The doctor, then, declared him cancer free but with a precautionary measure of monitoring the blood counts every six months. There was no sign of abnormality in his blood counts for next 4 years. On 26 July 2014, Aditya developed high fever post that a blood test was done. It was observed that the blood counts had dropped showing symptoms of relapsed blood cancer. As doctors confirmed his as a relapsed case, the chemotherapy treatment started in the 1st week of August 2014 under Dr.Vijay Ramanan, Hematologist. He was administered induction phase chemotherapy post which bone marrow aspiration test confirmed his cell blasting as 81%, which was very high. A second opinion was sought from Dr.Shripad Banavali, Head Prof. Pediatric Oncology, Tata Memorial Centre, Mumbai. After repetitive chemotherapy session for approx. six months, Aditya has come to remission phase with 0% cell blasts i.e. now he is eligible for bone marrow transplantation for which a matching donor was not found in the family. Hence, his parents approached various stem cell registries in India through which GENEVANDHU who has access to global stem cells registry found a unrelated matching donor (match score: 9/10) in France. The estimated cost for the various tests to be performed on the donor and the expense cost for bringing the bone marrow to India in around Rs. 30 Lacs. The transplant cost estimated by Ruby Hall Clinic is around Rs. 20 Lacs. Thus, the total cost for the entire process is Rs. 50 Lacs. Belonging to the middle-class family the amount was too huge to manage but his parents did not lose out hope and did a crowd funding for him. Initially the campaign did not pick pace but eventually with the involvement of media, they managed to get full funding for the transplant.
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