A charity golf auction organized by a prominent course architect and his family has raised over $6 million to fund research into a cure for juvenline Batten disease.

A Langford mom says she feels “blindsided” by the province’s decision to end funding for her terminally ill daughter’s ...

The exact number of kids with Batten disease remains unknown; however, some researchers have estimated it affects around three out of every 100,000 children in the U.S. Two of Tracy VanHoutan's ...

Get Instant Summarized Text (Gist) Batten disease, a fatal neurodegenerative condition in children, also affects the enteric nervous system, leading to severe gastrointestinal issues. Gene therapy ...

The only drug that treats children with a rare degenerative disease called Batten disease could be withdrawn within the next few months if negotiations over its price fail.

Nine-year-old Charleigh Pollock, who attends Happy Valley School, will soon lose funding for the enzyme replacement infusions ...

Charleigh's mom says she is hopeful but "very cautious" after hearing B.C.'s Ministry of Health will review the funding of a drug for the terminally ill nine-year-old.

The province's decision to withdraw funding for a terminally ill Langford girl’s life-sustaining treatment is under 'urgent ...

The mother of a terminally ill 11-year-old has spoken of her heartbreak at knowing her daughter may not live past her teens. Anna Lowri Roberts, from Sarn Mellteyrn, in Gwynedd, was diagnosed with ...

Researchers at WashU Medicine 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 ...

The province's decision to withdraw funding for a terminally ill Langford girl’s life-sustaining treatment is under 'urgent ...

Charleigh Pollock, 9, is being treated for a terminal neurological disorder known as Batten disease with twice-monthly infusions of a drug that costs about $1 million per year.