After receiving the diagnosis of Spinal Muscular Atrophy (SMA), it was devastating. I decided to jump in head first and get involved to do my part to help find a cure/treatment for the disease for my children and so many others. As a family, we fundraise. We get involved in clinical trials to advance medical research. We push for better legislation for rare diseases. And most importantly, we live each day to the fullest and we won’t stop fighting until there is a cure!
I do not think there is any other quality so essential to success of any kind as the quality of perseverance. It overcomes almost everything, even nature.
The National Pediatric Research Network Act (NPRNA) PASSED Congress and was signed into Law on November 27th 2013 by President Obama.