Batten Disease expert baffled by BC's decision to cut funding to nine year old Charleigh Pollock for her life-sustaining medication, Brineura ...

B.C. Health Minister Josie Osborne has directed staff to investigate the case of a terminally ill Langford child who is weeks ...

While most parents of kindergartners are worried about their kids learning to read and playing well with others, Bryan and Beth Fugere of Shakopee are worried about enrolling not just one, but two ...

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 ...

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 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 ...

Charleigh's mom says she is hopeful but "very cautious" after hearing B.C.'s Ministry of Health will review the funding of a ...

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

Making memories is something most people do everyday, sometimes without realizing just how important memories can be.

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 ...

Anna Lowri Roberts is one of 39 people in the UK with CLN3 Batten Disease The mother of a terminally ill 11-year-old has spoken of her heartbreak at knowing her daughter may not live past her teens.