For a parent whose child needs regular blood transfusions, learning that a transplant could offer a cure brings hope. But another question soon follows: can we reach that care, and can we afford it? A collaborative study involving Sankalp, Cure2Children Foundation and partner centres explores how more families could have that opportunity.
If you ever wondered what your support meant, this day held a 1000 answers.
Last month, we were counting the minutes.
On 5th September, we all came together in Bengaluru to celebrate 1,000 bone marrow transplants with the people who helped make this possible. There were a thousand reasons to be grateful, each with a name, a face and a family.
When a Child Undergoes a Transplant, How Does a Family Know Every Step Is Safe?
Most parents preparing their child for a bone marrow transplant may never have heard of JACIE. But they know the fears behind it: Is every step safe? Is the laboratory following the right processes? Is the team prepared for infections and complications?
Until 30th July, a pregnant woman in Gadchiroli who required fetal screening often had to travel to Nagpur or Chandrapur. For families from rural and tribal communities, this meant additional expense, lost time and a difficult journey during pregnancy. For some, distance could also mean delaying or missing timely prenatal diagnosis.
As we enter 2025, we reaffirm our commitment to a thalassemia- and sickle-free India, where no one suffers from blood disorders. This year, we are embracing transformative changes to strengthen, refine, and scale the prevention, management, and cure models we’ve developed over the past 14 years. Our focus is on amplifying impact and advancing our mission for the greater societal good.
"Every question sparks a journey, every discovery fuels the next—at San
Thanks to the success of the Sankalp Program For Thalassemia Cure, people from different corners of the country look forward to our group for BMT for thalassemia. With haplo identical transplants also beginning to show some promise, BMT is now being sought by many families. The not for profit costs and the fine results has made even people of Kutch look forward to transplants.
It has been three years since the time Sankalp started the program for thalassemia cure. We started our bone marrow transplantations for patients who had a matched related donor only. Even in this selected group of patient, recent data shows that the team has achieved 95.5% disease free survival and 98.3% overall survival last year, building upon the success of previous years. Specially in the matched sibling context, the team improved disease free survival from 89.1% across the years to 98.3% for last year alone.
The most essential aspect of caring for severe thalassemia syndromes (ST) with the inability to spontaneously maintain haemoglobin levels more than 7 gm/dl is a good blood transfusion service.
People who read scientific data know that often they come across an abstract of a scientific publication which looks interesting but they cannot read the full article because of a prohibitive fee. Published scientific research seems to be within reach only to those who are part of elite academic institutions and business.
In 2003, we saw a man die in an ICU. The family of the man was running from pillar to post looking for blood donors! The pain, agony and helplessness led to the formation of Sankalp India Foundation. For some time after that, we continued to see blood banks as institutions where blood should be provided when when there is a need. We continued to maintain donor lists! As we worked through the blood requests - we realised that by waiting to donate blood when people need, we were actually ensuring that the family goes through very anxious time.
Time has flown by and we have entered the 15th year of operations. When we started off in 2003, little did we know what distance we would have walked. Sankalp has progressed from a truly voluntary organisation to something that today employs nearly a dozen people in powerful change making roles.
