Pratidi
The Pratidi project is the flagship initiative of the MIND trust, focusing on providing hope and support to individuals living with Muscular Dystrophy (MD) and Spinal Muscular Atrophy (SMA). Its primary objectives are to raise awareness about neuromuscular diseases within society, offer assistance to those affected, and facilitate medical research in this field. The project's name, "Pratidi," aptly conveys its mission of instilling hope. In the current scenario, there's a growing number of individuals fighting with these conditions. To reduce the spread of these conditions, the project focuses on gentler treatments like physiotherapy instead of more aggressive approaches that could worsen the situation.. Furthermore, Pratidi seeks to harness ongoing research on neuromuscular diseases to benefit MD and SMA patients. It recognizes the importance of addressing the mental health aspects of these conditions, as psychological well-being can impact disease progression. The Pratidi team is well-equipped to achieve these goals. They've engaged in collaborative efforts, including meetings with medicine manufacturers specializing in precision genetic medicine for rare diseases. Such interactions have provided lvaluable insights into cutting-edge research and potential treatments. Additionally, the team has achieved a significant milestone by publishing an informative booklet about neuro muscular diseases, particularly muscular dystrophies. This resource serves as a valuable reference for patients and the general public, aiding in raising awareness. Moreover, Pratidi has organized webinars featuring medical professionals, fostering direct communication between doctors and individuals affected by MD and SMA. One of the project's most substantial challenges is funding research initiatives, given the substantial financial requirements. However, its overarching goal remains to create a society where MD and SMA cease to be sources of suffering.
Since muscular dystrophy and atrophy are genetic diseases, the only solutions are changes in the DNA or gene editing and gene therapy to correct the faulty DNA. The combination of state – of – the – art lab and equipment to make it, combined with the long delay required for testing, can make the drug very expensive. In short, medicine is too high for ordinary people to dream of.This is the significance of the idea put forward by the respondent. If we could have manufactured such drugs in India completely, we would not have had to pay crores of rupees for the drug. In addition to the price, tax may charge extra .If it had been manufactured here completely, there would have been no such tax in India.All the companies that approached the government in connection with the manufacture of the drug were faced with the situation of being rejected due to lack of funds.But MIND believes that this is also possible when you think of the ten millions of such patients. MIND wants the government to take immediate action to provide free or low – cost genetic testing at district hospitals and medical colleges.Thus accurate diagnosis is made and patient information is communicated to the pharmaceutical companies and the government with a collective effort to start a research lab in India, that’s a dream of MIND’s PRATIDI. MIND tried to be a part of the some DMD clinical trials..and, as mentioned earlier, MIND conducted a free genetic test campaign in collaboration with Delhi AIIMS for those who could not do the genetic test.Some people sent blood samples in it.Unfortunately, the wave of Covid -19increased and the result did not come.However, within the next one year, the genetic test of all MIND members will be targeted.
The physical and mental suffering of a person going through a state of illness is immense.The thought of being dragged to death by hell hurts them even more. If the increase in the number of patients exceeds a certain level, rehabilitation will also be impossible. The only way is to make medicines available to them to reduce the severity of the disease.
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Mobility in Dystrophy (MIND) Trust was formed in 2017, by us patients suffering from Muscular Dystrophy (MD) & Spinal Muscular Atrophy (SMA). In 2016, we started off as a small Whatsapp group of patients reaching out to each other.
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Reg. No: 132/2017
Building No: IV/162, Pichathara house Puthiyakavu, Mathilakam post Thrissur, Kerala, Pin 680 685
Building No: IV/162, Pichathara house Puthiyakavu, Mathilakam post Thrissur, Kerala, Pin 680 685
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