Perhaps we could all release the same color balloon from our bedroom windows at the same time in memory and solidarity. Perhaps this is something we could do each time we lose someone from our community. Something in memory but also something visible that might draw attention that people are loosing there lives to this disease.
If we all tied some string with a note attached to Bob, or about Bob's death with an address to this thread or a website with Bob's story, when people found them, some may be interested/ curious enough to look up the address online and read his story. We would probably need to give it a couple of weeks to get the message around the ME community and set a time and date.
Maybe we could get some media interest to if people are wondering why these same colored balloons are appearing around the world.