On Thu, 2014-08-21 at 23:57 -0400, John Sundman wrote: > I think it's a combination of things. > > -- ALS is a syndrome with which many people are at least passively aware -- > it's "Lou Gehrig's Disease", etc. So "raising awareness" is more a matter of > reminding people (easy) than educating them about something of which they > know nothing (hard); > -- it has a catchy name (ALS) -- much easier to remember than Pontine Giloma;
There was a specific motive in my using the name Pontine Glioma. A friend and colleague of mine lost his 14 year old son after a 2 year battle against a Pontine (midbrain) Glioma. The condition is essentially incurable and fatal, pretty much like ALS. These diseases are so uncommon that few non medical people have heard of them and few doctors (most of whom have heard all these names and study about them) come up with innovative "challenges" to fund research because I think doctors are more likely to think of common diseases without solutions as better targets for funding. As it turned out the poor guy who conjured up the ice bucket challenge started it because he had a close friend who was diagnosed with ALS and was distressed to see that friend fade away. shiv
