This problem first struck me when I checked into a hotel two days into a large ALS conference. After I told the desk clerk that I was with the ALS group and he found my reservation, I asked him if he knew what ALS is. I expected him to come back with, "Lou Gehrig's Disease. They even gave me this nice wristband." He said he didn't know. Two days of working with people who professionally represent the ALS cause and nobody thought to fill the desk clerk in. It could have been the American Llama Society for all he was told. The meeting planners and the individual attendees did not spread the word about ALS.
It's simple. "I'm with the ALS group... Do you know what ALS is?... It's Lou Gehrig's Disease... still don't know the cause... still no cure... still terminal." That's all there is to it.
Yesterday I helped at an ALS walk. The young attendant in the parking garage didn't know what ALS is. The concessionaire on the park grounds didn't know what ALS is. The fellow guarding the adjacent event didn't know what ALS is. Two couples walking through the park didn't know what ALS is. They do now. It's simple.
You can be sure that anybody who works for a business whose name is not quickly identified with its product has a hook to make sure that hotel staffs and catering personnel and car park attendants and security guards know what that product is.
It should be the personal responsibility of everyone engaged in the fight against ALS (especially those who are being paid to do so) to spread the word. Never just say, "ALS." Always say, "ALS... do you know what that is?"
Perhaps on annual performance appraisals there should be an evaluation of some simple things like personal effectiveness at spreading the word.