For Families Fighting Batten Disease, Quality of Life Is Critical

For Families Fighting Batten Disease, Quality of Life Is Critical

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For Families Fighting Batten Disease, Quality of Life Is Critical

Doctors, scientists, and patient organizations like Taylor’s Tale — the nonprofit I co-founded to advance breakthrough treatments for Batten disease and advocate for life-changing public policies — invest significant time and resources into the hunt for lifesaving treatments. After all, CLN1 disease, or Batten disease, is universally fatal, like many other rare diseases. Since 2007, Taylor’s Tale has made significant contributions to help advance important work in gene therapy, enzyme replacement therapy, and small-molecule drug…

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