
July 7, 2025
Family Experiences Unexpected Improvements of Personalized Treatment for Batten Disease
The parents of twins Amelia and Makenzie Kahn, who have been battling Batten disease, a rare genetic disorder, for eight years, are now celebrating signs of progress one year into a first-in-kind clinical study at UNC Health. Led by Yael Shiloh-Malawsky, MD, the new personalized treatment, Zebronkysen, is helping to better manage the disease.