The Parent Project for Muscular Dystrophy Research Inc
My 5 year old son, Raghav is a naughtly little boy with a lovely smile and really loves playing with LEGO. He was diagnosed close to two years back, to have Duchenne Muscular Dystrophy. A short 3 min video on Introduction to DMD (https://vimeo.com/133337162). It is a seriously progressive, and fatal genetic disease, which causes progressive muscle loss and function, including respiratory and heart function. This occurs only among 1 in 3500, affecting mostly boys. To date, there is no cure or treatment to stop the progression of Duchenne.
We feel so fortunate that we live in a time that medical research is achieving huge success. There are on-going promising research/clinical trials in the pipeline, which are mostly funded by government. But in the last few years the government funding is declining. Since it is a rare disease, there is not much interest among private pharmaceutical companies, as there won’t be much profits. So, fund-raising by parents, is the main source that go towards research to find a cure.
I am member of, Parent Project Muscular Dystrophy (PPMD), a charity organization run by parent volunteers. Please support me as I participate in the Disneyland 10K as part of PPMD’s Run For Our Sons, Team Raghav, in September. Together, we will go the distance to end Duchenne. Raghav and other boys with Duchenne are truly in a race against time as their muscles deteriorate further each day. Please help us put an end to the devastating disorder by making a donation.
Thank you for your support!
- Kannan Kumar