Glenn O News Today

Fda. and when the government shuts down and theres less obviously resources and staffing, some of those steps along the way begin to get pushed back, not to mention funding not only for san felipo syndrome but also many other rare diseases that children with these terminal conditions are kind of waiting on for expedited approval. >> so until the government reopens, precisely what does that mean for you guys? >> so theyre interacting with the fda and all the preclinical steps that have to happen ...

And every time she has those behavioral changes, were thinking in our minds is this it, is this the beginning of the decline? because that is a big question in everyones mind in this community is, you know, when do they reach their peak? and every child is different. so to have that weigh on your mind all the time is really concerning. and to hear about the parents experiences that have walked before us when they say ive had to see my child so frustrated when they began to lose speech, when they...