Thalassemia Free Society
by Asmita Kothari
This project was started by Mr. Chandan Motwani in 2011 in Akola, India. According to him, diagnosis of the Thalassemia minor blood disorder is very normal and frequent in various Indian communities. He notes that if two Thalassemia minor patients get married; chances are that the newborn might be a Thalassemia major and this may be a problem. Thalassemi major can cause severe anemia and many other health problems, even including early death from heart failure in the worst cases. After a survey of blood tests in Mumbai; he found that many people especially teens in India are Thalassemia patients which in time can cause the majority of the population to be affected by Thalassemia major disease.
He took up this project called “Thalassemia free society” after the Landmark Self-Expression and Leadership Program and started off by creating awareness programs. During this time, he faced a ton of hurdles such as negative feedback and disrespect for his efforts. But despite this, he kept enrolling younger members into the campaigns and created awareness in villages like Akola in Maharashtra. He worked with various trusts and NGOs who supported him to work on a higher level. Now, since the past four years, there is not a single Thalassemia major child born in Akola.
It was back in 2002 that his friend, Dr. Harish Chandani, who lost his son, rented a place for blood transfusion and cured many children along with him. They worked in the same way until 2009. He later got 550 samples during his first awareness program and later covered various parts of Maharashtra. Later he realized the parents are facing problems due to the regular blood transfusions and took up the plan of getting a bone marrow transplant done. He has successfully cured four children now and looks forward to serving many such patients. He reached out to more than 7,000 families and has got various media mentions due to his tremendous dedication towards this cause.
He further plans on working on a micro level and visiting villages with no awareness. He also wants to run a nationwide project to create an impact in the country and eradicate Thalassemia.