Batten disease: Rochester unites families, scientists fighting childhood disease

Armen Hareyan's picture

Batten Disease

Only hundreds of children in the United States today are living with Batten disease, a rare syndrome that erupts with little warning, first stealing their sight, crippling their cognitive and motor capacities, and ultimately, taking their lives.

For these children and their families, the disease is devastating, and for some, its rarity makes finding answers and treatment as vexing as the syndrome itself. But beginning Thursday, July 12, many of them will journey with hope to Rochester's Hyatt Regency Hotel, 125 E. Main St., for a unique doubleheader that pairs two of the biggest meetings in the Batten community