Press Coverage

  • DNA Science Blog

    Gene Therapy Update: Remembering Jesse Gelsinger

    The thumbs-up to start a clinical trial came in May. Efforts of the family of Taylor King, who died a year ago at age 20, as well as those of AAV guru Steve Gray, at UT Southwestern, lie behind the clinical trial about to begin, which Abeona Therapeutics is sponsoring.

  • Batten Disease News

    Taylor’s Tale Co-founder Races to ‘Change the World’ for Batten Disease Community

    Laura King Edwards ran a half-marathon as a fifth anniversary nod to her sister’s first race — a 5K school run in 2008 that would be but a happy memory had Taylor King not been diagnosed with Batten disease (CLN1) some two years earlier, and already blind.

  • Batten Disease News

    Can Patients and Families Really Drive Therapy Development?

    The therapy development process is a marathon, not a sprint. But unlike a marathon, the road any treatment must travel from the laboratory to the marketplace is filled with roadblocks. It’s often nonlinear, with starts and stops, backtracking and reworking.

  • Batten Disease News

    Striking a Balanced View of Clinical Trials

    This month marks 13 years since my sister’s diagnosis of CLN1 disease, or Batten disease. That means I’ve had 4,745 days — or 113,880 hours, or 6,832,800 minutes — to get used to the thought of outliving her, even though she came into the world on a warm August night when I was already a high school junior.

  • Batten Disease News

    3.1 Ways to Fight Your Rare Disease

    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.