Researchers at Baylor College of Medicine, Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital and King's College London have discovered a treatment that improves the ...

Neuronal ceroid lipofuscinosis, commonly known as Batten disease, is an inherited pediatric neurodegenerative lysosomal storage disease caused by mutations in the CLN5 gene. The disease is incurable ...

Doctors told Gordon Gray his daughters would not live to see their 12th birthday — -- The Hollywood couple who started a foundation to quickly fund research to find a cure for Batten Disease, ...

Theranexus SA (FR:ALTHX) has released an update. Theranexus, in collaboration with the Beyond Batten Disease Foundation, reports positive 18-month results from its phase 1/2 study of Batten-1, ...

These young brothers have been dealt a rough hand — no kidding. Kristian Tucker, a married mom of three from Spokane, Wash., felt as if she’d been punched in the chest after her toddler sons, Michael ...

EDEN PRAIRIE, MN / ACCESS Newswire / April 9, 2025 / Today, the Born and Schneider family announced the launch of Helen's Pink Sky Foundation, a new nonprofit dedicated to accelerating research, ...

A fundraiser for a rare neurodegenerative disorder affecting a four-year-old girl with a connection to racing was highlighted during the 2025 Indianapolis 500. Helen’s Pink Sky Foundation was featured ...

Australian girl is one of 10 or 11 worldwide with rare form of Batten's disease. — -- When Olivia Thurston was born on January 15, 2008, weighing in at 8 pounds and 6 ounces, she was a happy and ...

INDIANAPOLIS (WISH) — Helen’s Pink Sky Foundation is hosting a lemonade stand event to raise awareness and funds for Batten disease research. The event, inspired by Helen’s upcoming fourth birthday, ...