“Money is not unlimited, and so if a drug is costing a lot of taxpayer dollars, and not in the eyes of experts making a meaningful difference to the patient, and despite what you would kind of like to do to support the family, you have to make a decision …

… ’s medical treatment for Batten disease. Fales posted a video … decline for children with Batten disease. Madden Stacey is just … child in Alberta with Batten disease. His dad Aaron Stacey … He started Brineura treatment for Batten disease nine years ago. With …

Already they have secured a wheelchair and specialised car seat from the NDIS, but other essential equipment, like a shower commode, neck support, hoist, and wheeled walker, has all been loaned from the community, or need to be hired through the NDIS.

… type2 (CLN2), a form of Batten disease characterized by deficiency in the …

… .” What is Batten disease? According to the foundation website, Batten disease is a rare … been diagnosed with Late Infantile Batten disease (CLN2) caused by a … no cure. How is Batten disease inherited? Batten disease is inherited through an autosomal …

… raise awareness and funds for Batten disease research. The event, inspired by … to educate the public about Batten disease, a rare neurological condition affecting … of harmful substances. Symptoms of Batten disease in children include delayed speech …

… and terminal neurological disorder called Batten Disease and had been receiving a … said. RELATED: Canadian families with Batten disease comment on Charleigh May suggests …

… for children battling CLN6 Batten disease." This partnership highlights … remains passionately committed to combating Batten disease. Through the Charlotte & … importance of continued investment in Batten disease treatments. Beyond research, the …

… seizures and was diagnosed with Batten disease.  According to her mom, Stephanie … ever treated a child with Batten disease, and she is the only … clinical trials for children with Batten disease, which is a barrier to …

… girl tragically afflicted with CLN2 (Batten) disease, I am writing to express …