'Streamlined' FDA Won't Help My Daughter w/ Her Rare Disease

'Streamlined' FDA Won't Help My Daughter w/ Her Rare Disease
AP Photo/Andrew Harnik, File

As I watch my daughter fight a deadly rare disease, I'm hesitant to support the Trump administration's plans for sweeping deregulation of the FDA.

My 4-year-old daughter, Elle, is in the fight of her life. Her older sister, Milla, lost her fight last November. Their opponent? Batten disease, a rare, fast-moving, and fatal condition that destroys the central nervous system's ability to function.

Elle has a chance to help manage, or maybe even beat, her disease that Milla didn't have: a clinical trial in which an investigational protein is infused directly into Elle's brain every 14 days.

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