Second, About Chris Reeves, I've condensed the lil' debate's question to, "Did it matter that he became an advocate only because it affected him?". Again, I digress to my own experience:
As noted above, I married my wife four years ago. Like most families these days, this family came "ready-made". My wife had three children by her first husband, ages 9, 12, & 15. The 15-year-old was born with Cystic Fibrosis, a terminal disease. I'd never heard of it before, but it was made clear to me that getting into this love affair with my wife-to-be included the fact that I'd be dealing with a step-daughter with a life expectancy of about 30. (She has a milder case than many). It's the same daughter mentioned above, now twenty, that gave birth to my step-granddaughter recently.
Did I pay any attention to terminal diseases of any kind before? Nope. Closest I got to paying any mind of any kind to that was having condoms on hand. Have I paid attention since? H*ll Yeah. Just like Reeve's donations/foundation for spinal research, a famous football player named "Boomer" Esiason had a son born with Cystic Fibrosis some years ago. As luck has it, he is from Cincinnati, Ohio, as are we. And thanks to him, Cincinnati has the biggest, best funded, most scientifically advanced Cystic Fibrosis Research/Treatment Center in the WORLD. If not for the luck of location, my wife could never have afforded treatment of the caliber her daughter has recieved, who might not even still be alive otherwise.
Does it smack of pretentiousness to you that somebody that is directly affected by something tries to do something about it "after the fact"? I politely say, "Get over it." It takes a wake-up call to get 99% of things started. "Neccessity is the mother of invention", right? Once upon a time, some cro-magnon was dragging a 500-pound elk up a rocky incline, and in his dim brain, an idea emerged, "what if this animal were in smaller parts?", and he eyed a sharp stone that had just nicked his toe... (obligatory knife-content.)