Kozhikode (Kerala): A cycle marathon has been organised in the district as an innovative means of raising funds, around Rs 18 crore, for the gene replacement therapy of an infant hailing from here who suffers from the rare genetic disorder, spinal muscular atrophy (SMA) which makes muscles weaker and is fatal for those below two years of age.
In the last one year Kerala has seen various fund raising methods, like crowdfunding or moving the courts for aid from the government, to buy the Zolgensma Onasemnogene injection, which is the only known treatment for SMA caused by a faulty gene and costs around Rs 18 crore. Some of these efforts have been successful in raising the funds.
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This time round the locals of Paleri town in Kozhikode district, where the child suffering from SMA lives, have opted for a new form of crowdfunding through a cycle marathon from Kuttiady here to Thiruvananthapuram -- a distance of over 400 kilometres -- to raise funds for the infant's treatment. They hope that people along the way who see the cyclists -- sporting a green t-shirt with the child's picture and details of his illness -- would come forward with some monetary aid.
However, they have only two months to collect the funds and get the medicine, as after that the drug may not prove effective for the child. As the marathon was flagged off, TV channels showed the organisers expressing hope that they would be able to spread word of the child's condition across the state and that kind hearted persons would come forward with the necessary aid. (PTI)
