Dave Esposito, father of a child with Sanfilippo syndrome, wants the FDA and the pharmaceutical industry to know that their definition of a good outcome measure is different than a parent's definition.
Key questions asked among men, women, and children with a diagnosis of Syringomyelia are the following: “What physical therapy exercises are recommended for Syringomyelia?”, and “Should physical therapy be a part of my recommended treatment?”
Logan is a 21-year-old with a progressive neurodegenerative disease who likes adventures. The team at Adaptive Adventures use specially adapted sleds, and a bit of muscle, to guide Logan through the forest.
The Alport Syndrome Foundation (ASF), the Pedersen Family and the Kidney Foundation of Canada (KFOC) have announced funds are availalbe for researchers hoping to advance our understanding of Alport syndrome.