A Chapel Hill family turned heartbreak into action after both their twin daughters were diagnosed with Juvenile Batten disease, a rare and devastating genetic disorder. Instead of giving up, the Kahns launched the ForeBatten Foundation, raising over $8 million to fund research and support others facing this diagnosis. Their efforts led to a groundbreaking, first-of-its-kind drug trial at UNC—tailored specifically for their girls. While there’s still no cure, the progress has brought moments of joy and hope back into their lives. How do you think communities can best support families battling rare diseases? #Safety #ChapelHill #RareDisease