1. Support the cause of children suffering from blood disorders
Blood cancers account for half of childhood malignancies. They are broad of two types, myeloid and lymphoid. Acute Lymphoblastic Leukemia or ALL account for 90% of blood cancers between the ages of 1-16 years. Diligent research and exhaustive clinical trials have now made it one of the most curable cancers. In the western world, 80% of children diagnosed with ALL get cured with chemotherapy alone. Of the other 20% which relapse, 50-60% are cured with further treatment including a bone marrow transplantation.
In developing countries including India, the majority of children with ALL fail to access proper healthcare facilities and even if they do so, a large number of the default treatment due to logistic and financial constraints.
The same is true for the other variety i.e. Acute Myeloid Leukemia or AML as well.
Our endeavor is to provide awareness, access, and support to all such children who could lead a happy and healthy life and productively contribute to the development of the society.
Thus, the journey does not end with successful treatment. That is the beginning of a long and productive life through proper guidance and education.
As an organization, we have facilitated the treatment and rehabilitation of many such children with our meager resources. It's only through whole-hearted participation from all walks of society can we make it a reality for all such affected children in our country
Support the cause of children suffering from blood disorders
The success in treatment of cancer depends on the understanding and amalgamation of individual biology, socioeconomic, ethnic, and geographical circumstances. Very little, if any, original research has been carried out on childhood cancers in India. We have blindly followed the data from Europe and the USA.
The factors predisposing to childhood cancers are poorly understood. In a country where air and water are equally polluted, high-tension electric wires and mobile towers are rampant in residential areas, have we made any sincere efforts to figure out if any of these are putting our children at risk!
Disease biology differs from geographical and ethnic variations. Little do we know if the biology of acute leukemia in children in our country differs from what is published in western literature. The metabolism of drugs differs according to population genetics. Do we need to use the same drugs at the same dosages? Or, use different drugs at different dosages?
Uncompromised research on each of these areas is the need of the hour. Our organization is striving to achieve this in various spheres of childhood leukemia.
We invite all interested researchers, collaborators, philanthropists to join us in this endeavor.
2. Research on Bone Marrow Transplantation (BMT) in Children
BMT from a donor or Allogeneic BMT is often the only curative treatment for advanced blood cancers. The existing knowledge about allogeneic BMT is largely derived from that in adults. It is often merely extrapolated to children. Unlike solid organ transplantation, allogeneic BMT is entirely dependent on the compatibility of HLA antigens between the donor and the patient. Thus, a fully HLA matched donor from the family is deemed to be the best option. Unfortunately, for biological reasons, the availability of such donors is restricted to only 20% of the patients. The development of volunteer unrelated donor registries in the western world has led to the availability of matched unrelated donors from such registries to a good 80% of the Caucasian population. With its tremendous genetic diversity, the Indian population can barely find a donor from such registries.
We inherit half of our HLA genes from each parent and pass it on likewise to our children. Thus, HLA – half-matched or haploidentical donors are readily available in the family in the form of our parents, children, and 90% of our siblings. The ability to carry out successful Haploidentical BMT was severely compromised until a decade back due to our lack of understanding of its immunological complexity. With better understanding, BMT from a haploidentical family donor is a reality with the use of certain inexpensive drugs in the immediate post-transplant period called PTCy.
We were the first in the world to point out that this approach for children was wrought with high rates of certain complications. Since then, through both basic and clinical research, we had innovated a different approach to carry out Haploidentical BMT in children, with success.
Our organization has provided expertise and logistic support for such research activities over the past 7 years with over 20 publications in this field.
3. Surviving after Blood Cancer
Following the ordeal of going through treatment for blood cancer, the biggest challenge lies in rehabilitating children back to their normal life. The after-effects of treatment linger for a long time even after a cure is achieved. The long term effects on growth, learning, behavior, and fertility are of paramount importance in shaping the future life of a survivor of childhood cancer.
In addition, cancer drugs can also have an effect on the heart and the lungs and need regular monitoring.
Society at large should take the responsibility of rehabilitating the survivors of childhood cancer to their normal life. Our campaign involves educational and sports institutions to raise awareness amongst the relevant stakeholders regarding the specific need of the survivors of childhood cancer.
4. A life free of Thalassemia
Β-Thalassemia Major is the commonest genetic disorder in India. About 10,000 children with thalassemia major (TM) are born in this country every year1. Despite the improvement in supportive care, the long-term outcome of children with transfusion-dependent thalassemia remains poor. This is due to a multitude of factors, including poor access to transfusion support, high prevalence of transfusion-transmitted infections, iron overload, and lack of monitoring2. Recent data from WHO confirms that about 12% of children born with transfusion-dependent β thalassemia are actually transfused, and less than 40% of those transfused obtain adequate iron chelation therapy.
BMT from a matched sibling donor was established as a curative treatment for this condition in the 1980s by Lucarelli et al from Pessaro, Italy. In patients who were reasonably well transfused and chelated before BMT, the thalassemia-free survival is more than 85%-90%3. However, only 10-20% of thalassemia sufferers find a matched family donor.
Our endeavor is to develop facilities for transfusion and chelation for children under the optimum circumstances so that children who cannot undergo BMT can lead a healthy and productive life. At the same time, we are conducting clinical trials to further the possibility of haploidentical BMT for children with thalassemia.
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