According to Charley's Fund, a non-profit started by Benjamin and Tracy Seckler who are parents of a child with DMD, based on steps being taken this week, the FDA will decide whether to grant accelerated approval for a treatment drug that is the best bet ever for kids with DMD, and they are urging their followers to write their congressman and senators showing support so that the FDA will not hold the treatment back from kids who have no time to wait.
In case you're unfamiliar with the sobering facts about DMD, here are just a few that can help you understand what's at stake for these kids - and why time is of the essence. DMD is currently 100% fatal. Most kids with DMD are in wheelchairs by age 10 or 12 and die in their late teens or early 20s. It's the most common fatalRead More »from Parents Hopeful FDA Will Give Quick Approval for Very Promising DMD Treatment