Six years ago, I sat in a doctor’s office and received the most devastating news any parent can hear — a diagnosis of Duchenne Muscular Dystrophy for my son Jack.
It came accompanied by a particular dismal prognosis. For the next few weeks, I struggled with thoughts of what might happen, or could happen, or, inevitably, would happen.
Since the diagnosis, we’ve depended on the strength of the DMD community for support and guidance through some trying times.
When I first walked out of that doctor’s office, I was filled with a sense of hopelessness, and felt helpless to combat such an overwhelming and devastating disease.
As the years have progressed, that hopelessness has been replaced, and I have been inspired by the efforts of a group of parents who have refused to give up on their children’s future.
In recent years, they have been a vocal and vital voice for change, lobbying the FDA (Food and Drug Administration) to reform approval methods and time periods for drugs that might offer hope to our community.
Those efforts have resulted in a resurgence of efforts to find cures and treatments for DMD. Dr. Laura Hagerty, the Muscular Dystrophy Association’s scientific program officer, recently updated progress on three major drugs that are in their final stages, all of which offer real hope for treatment and cure of DMD. She wrote in a recent article:
“It’s taken MDA 65 years of unwavering resolve, $209 million — more than any other organization aside from the federal government — as well as countless hours in the labs and clinics, and in the lives of MDA staff, researchers, clinicians and the families fighting this disease, to get to where we are today. Closer than ever. Closer to treatments. Closer to cures.”