Tim Kaine: “myotonic dystrophy is a rare, multi- systemic, progressive, inherited disease that affects successive family generations…”

“myotonic dystrophy is a rare, multi- systemic, progressive, inherited disease that affects successive family generations but is often misdiagnosed. Affecting as many as 1 in 2,100 individuals, myotonic dystrophy is the most common form of adult muscular dystrophy. However, there is currently no cure and there are no Food and Drug Administration (FDA) approved treatments. Today, I am pleased to introduce the first ever U.S. Senate resolution designating September 15th as International Myotonic Dystrophy Awareness Day. The resolution will help to highlight the devastating generational impact of this disease, focus global attention on accelerating drug discovery, and work to advance healthcare for our community. Caused by an inherited genetic anomaly, individuals with myotonic dystrophy experience varied and complex symptoms, from locked muscles, to heart, breathing, digestive, hormonal, and cognitive difficulties. It is not uncommon for older family members to only be tested following the birth of an affected child, and despite the availability of simple genetic tests, misdiagnoses can persist for decades. The different body systems affected, the severity of symptoms, and the age of onset of those symptoms varies greatly between individuals, even within the same family.…”