Reading this breaks my heart, especially when they're making such strides with treatment for diseases like Alzheimer's.
It's a very small comfort, but there is an indirect way that all of us can help:
http://folding.stanford.edu
Folding@Home is a distributed.net application that analyses protein models for scientists at Stanford University that are hoping to determine the cause of malformed proteins that cause diseases like CJD and Alzheimer's. I run it on my computer at home in the hopes that soon people won't have to suffer through what you're going through Raeanna.