Press Coverage

  • Batten Disease News

    My life changed forever 13 years ago. In the space of a few months, I started a new job, bought my first house, got married, and searched “neuronal ceroid lipofuscinosis” (Batten disease) for the first time.

  • Running Around Charlotte

    Those of us who love to run, keep our eyes wide open as we take each step. We scan for hazards, watch our path, maybe enjoy some scenery along the way. Laura King Edwards of Taylor’s Tale did just the opposite — she trained for and ran Charlotte’s half-marathon blindfolded.

  • DNA Science Blog

    The King family and their organization Taylor’s Tale has supported the research that made the clinical trial possible since their beloved Taylor was diagnosed at age 7 in 2006.

  • Batten Disease News

    As one of two healthy siblings in a family affected by CLN1 disease (Batten disease), I’ve had to find my own way forward as much as I’ve leaned on the experiences of others for survival.

  • Runner's World

    For Saturday’s Charlotte Half Marathon, one participant donned more than her running shoes, apparel, and bib: Laura King Edwards also had on a blindfold.