MR Foundation for the Prevention of Thalassemia
Our Story
Having experienced thalassemia in our own family, we understand first-hand the emotional and financial challenges it brings. Recognising how much more difficult the journey must be for families with limited financial resources, we started supporting the work of two NGOs, Thalassemics India and The Think Foundation in 2015. This included fundraising close to ₹5 Million (50 Lakh Rupees) through initiatives such as the Mumbai Marathon, which our family participated in for five consecutive years. We also helped identify possible partner organisations and supported blood donation drives. Both these NGOs play a critical role in supporting children with thalassemia whose families lack access to regular medical care, including essential tests, and in some cases bone marrow transplants, which remain the only potential cure for thalassemia today.
Building on these efforts, we set up MR Foundation as a Section 8 Company in August 2022 to work towards the prevention of thalassemia through greater awareness. Drawing on the experience of countries like Cyprus, Greece, and Italy, which have reduced the number of thalassemia cases significantly, we identified the need to create awareness around carrier testing, especially at the antenatal stage.
Our Work
Our mission is to reduce the number of children born with thalassemia cases through sustained outreach and awareness. We are concentrating our efforts in Greater Mumbai and Maharashtra to establish successful proof points before expanding further. Since our founding, we have been working to identify practical steps toward this goal by engaging with healthcare professionals, participating in conferences and relevant dialogues, raising awareness about thalassemia screening, and supporting programmes that provide critical care for patients and families.
Bone Marrow Transplants
We support vulnerable families in accessing BMT, which remain the only potential cure for thalassemia major. This work is currently being carried out in partnership with SRCC Children’s Hospital Mumbai, managed by Narayana Health.
Engaging with Gynaecologists
We work with gynaecologists and professional bodies such as the Mumbai Obstetricians and Gynaecologists Society (MOGS) to encourage thalassemia testing particularly for couples planning a family.
Collaboration with Government Entities
We are exploring avenues of collaboration with government entities such as the Sickle Cell Initiative and the National Health Mission in Mumbai.
HPLC Testing
We plan to use digital and other media channels to raise awareness about HPLC testing, the standard blood test used to identify thalassemia carriers.
Critical Gaps in Medical Care
We are working to understand critical gaps in the medical care available for children with thalassemia major as well as the support required for BMT in Maharashtra.
Meet the Team
The Thalassemia Carrier Test
A simple blood test called HPLC can determine whether an individual is a thalassemia carrier. The test is widely available at most major laboratories.
Carrier testing is especially important for individuals or couples planning to start a family. It can also detect other haemoglobin-related abnormalities, including sickle cell disease and other rare disorders.
If both parents are carriers, there is a 25% chance that their child could be born with thalassemia major. Knowing your carrier status allows couples to make informed decisions when planning a family.