Imagine hearing your mother has been diagnosed with Amyotrophic Lateral Sclerosis (ALS)—more commonly known as Lou Gehrig’s disease. Between 2011 and 2014, almost 25,000 people in the United States died from it. While the disease has been diagnosed for decades, there is no known cure. With that in mind, imagine that after the doctors provide the diagnosis, they explain that although there are promising treatments being developed in clinical trials, none are available because the Food and Drug Administration’s (FDA) burdensome and onerous review process prevents them from being used.

The McLinn family of Indianapolis is still fighting for their seven-year-old son, Jordan, who was diagnosed at the age of 3 with Duchenne muscular dystrophy. This is an aggressive disease that results in muscle weakness and loss first attacking the extremities, eventually moving to the heart and other internal organs. There is no known cure, yet, but there are treatments that can help manage symptoms and slow progression of the disease.