PPT1 is a recombinant protein used to treat an ultra-rare disease called Batten disease CLN1 for which there is ...

Holly Nayler, a 5-year-old from Essex, battles CLN2 Batten disease, a rare and fatal childhood dementia. With hundreds of ...

LINCOLN, Neb. (KOLN) — This weekend, hundreds of people gathered in Lincoln for a conference dealing with Batten Disease. It’s rare, it’s always deadly — and there is still no cure — affecting only a ...

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, ...

BEST FOR THEIR CHILD. A DAY OF CARING AND A DAY OF HOPE FOR FAMILIES BATTLING A TERMINAL NEUROLOGICAL DISEASE FOR THEIR CHILDREN, GOVERNOR JIM PILLEN DECLARED JUNE 9TH AS BATTEN DISEASE AWARENESS DAY ...

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 ...

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, ...

Researchers have described the neurodegeneration that occurs in the nervous system of the bowel in Batten disease, a rare and fatal genetic condition. In their latest study, a team showed that gene ...