Bengaluru-based Dystrophy Annihilation Research Trust (DART) is organizing the Master Muscle Marathon to create awareness about muscular dystrophy in Bengaluru on September 24.
Muscular Dystrophy (MD) is a Genetic Disease characterized by progressive weakness and degeneration of skeletal and voluntary muscles affecting boys who gradually lose their ability to walk and subjugated to wheelchair mostly by the age of 8 onwards and do not live beyond their early twenties due to cardiac or pulmonary failure.
It is estimated that over 500,000 Children are affected in India without any cure in sight.
Dystrophy Annihilation Research Trust (DART) isan organization founded and funded by parents of boys affected by MD in 2012 with the aim of providing solace and support to the families of children with Duchene Muscular Dystrophy (DMD).
RS Anand, a father of a child affected by DMD and founder of DART set up an R&D lab to try and find a cure for DMD.
DART is working on a treatment or cure for DMD using a technology called ‘exon skipping’.
However, before DART can test out the proof of concept on the children or run clinical trials, it needs to first do required toxicity tests for which it has outsourced it to companies to carry out animal testing of this drug.
These tests are currently underway.
DART NGO conducts various awareness events throughout the year. The “Master Muscle Marathon” is one such initiative organised every year to create awareness about muscular dystrophy disease and the trials faced by children all over the world.
Starting from the GKVK Campus in Jakkur Bengaluru, there will be a 3.5-kilometre and and 7.9-kilometre marathon to create awareness about DMD.
"We came to these numbers unlike the general 5k or 10k runs because one out of 3500 children are affected with DMD and there are 79 exons in the dystrophy gene," says Dr Arun Shastry, who is working on developing the treatment for DMD.