But with the agreement about to end, families worry about losing the sole existing treatment that will slow the disease's ...

The family of nine-year-old Charleigh Pollock will continue to be covered for the drug, which costs $1 million a year, until ...

CLN2 Batten disease is an incurable genetic disorder ... have declined significantly without the drug Flory's fortnightly treatment at Birmingham Children's Hospital gave the "incredible, Peppa ...

Since starting Brineura treatment, Isaac has experienced significant ... and hear about the campaign for children with Batten disease. "I was really touched by the strength they have shown in ...

Researchers working with Beyond Batten, a foundation Garland’s parents started, discovered a combination treatment that might help slow the progression of the disease. In fall 2016, the ...

Provincial funding of 9-year-old Charleigh Pollock's life-sustaining treatment has been extended by 3 months until the end of ...

The mother of a six-year-old girl with a rare neurodegenerative disease has urged health bosses to "do the right thing" amid fears over the future of the medication she takes. Flory, from Coventry, ...

Funding for Charleigh's life-sustaining medication has been extended for another three months, according to her mom.