NHS access to the drug, which costs over £500,000 per patient per year, had been due to expire at the end of May, however an ...

June 9th is International Batten Disease Awareness Day. It's an opportunity for those dealing with this horrific, ultrarare condition to share stories, spread awareness, and maybe spur on much ...

The foundation is named for a Minnesota girl, Helen Betty Born, and raises awareness and funds research to find a cure for CLN2 Batten disease, which affects two to four of 100,000 children in the ...

Kerri Taylor smiles when she talks of her granddaughter, Alara. Oliver Rodden is a journalist for The Goulburn Post. He ...

Despite the unrelenting rain Saturday morning, dozens of friends, family and supporters gathered at Eagle Elementary for a 5K run/walk to support a member of their own community — little Ollie Thoene, ...

“CLN6 Batten disease is a devastating disorder with no approved therapies, and families deserve hope,” said Dr. Raymond Wang, Director of the Campbell Foundation of Caring Lysosomal Program at ...

Charli's mom, Stevi Ashcraft says her daughter is the only child in San Antonio with CLN6 Batten Disease. "You wouldn't be able to tell that she has anything, except for maybe like a speech ...

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 ...