Nicole Wetsman,  —

Brineura Approval Invigorates Research, Awareness About Other Batten Treatments

Soon after the first-ever therapy for Batten disease was approved by the U.S. Food and Drug Administration (FDA) in April 2017, Danielle Kerkovich, principal scientist at the Beyond Batten Disease Foundation, started fielding questions from families wondering if…

Clinical Trials, Though Experimental, Often Are Best Option for Batten Patients

Kristen and Gordon Gray weren’t willing to take no for an answer. When their 5-year-old daughter, Charlotte, was diagnosed with a rare form of Batten disease in 2015, the doctors told them there was nothing they could do. There was no treatment available for Batten disease,…

Batten Disease Families Start, Rely on Foundations to Advocate, Advance Therapies

Taylor King was nearly 8 years old — a runner, who loved pink and wearing dresses — when she was diagnosed with infantile Batten disease in July 2006. By that October, her family had started fundraising for a cure. “At the beginning, there was a huge…