Colin,
Nice to meet you...
The fact that some are not as lucky with their care needs to be changed..I'm all for research...
But, why can't some orgs push for changes of legislation and more of a standard of medical care today to help PALS live longer...
I mean do PALS still have to live as short of lifespan as Lou Gehrig did?..for many they still do...
But, the option to live as long as Hawking should apply to all...Lisa