Emma Austin needs expensive therapy every two weeks to slow the progression of Batten disease, which has "no known survivors" Cara Lynn Shultz is a writer-reporter at PEOPLE. Her work has ...
This is the course of Batten disease, a progressive inherited nervous system disorder resulting from mutations to the CLN3 gene. "It is a devastating neurodegenerative disorder of childhood," said ...
But in other ways he is very different. Last summer, after testing following two years of mystifying seizures, his parents were told he had Batten disease - one of the symptoms of which is ...
In a new study, a team of researchers, including Anneliene Jonker, has published, in Nature Reviews Drug Discovery, the first ...
The news led to a stock surge on expectations that forthcoming data for the company’s experimental gene therapy for Rett ...
Eight-year-old Amelia Carroll, of Poynton, Cheshire, has Batten disease, which is incurable and causes seizures, visual impairment and mobility loss. Her brother, 11, who has the same condition ...
The two boys will be participating in the 5K along with their cousins, Korry Sharp, 19, and Rachael, 16, who both have Finnish Late Infantile Batten Disease. For the boys, it”s a chance to spend ...
An Australian child suffering from Batten disease has had to travel to Italy because the experimental drug to treat him has not yet been approved by Australia. The drug was administered at Rome's ...
Gail Rich's daughters Jessica and Nicole were both diagnosed with a rare and incurable neurodegenerative condition, commonly known as Batten Disease. The family's battle for funding and access to ...
For 7-year-old Emma, the rage is a symptom of Batten disease, the fatal, rare illness with which she was diagnosed at age 4. “But I have to take the book away. She's not willing to eat or drink ...