Okay! Afternoon in the ballroom . . . we start with Marilyn Smith introducing Rachel Hammerman and Michael Mangienello, both of whom have helped out with this event again and again over the last 4 years. Rachel goes first; she’s saying that every one of us has a set of handouts for our legislators. There’s a set for us and a set for each person we meet with.
Our asks: Pass the CDRPA, increase funding for research at the NIH, make insurance companies, Medicare, Medicaid to fund adaptive equipment for use in homes and private rehab centers.
Michael’s turn: “This is my favorite weekend of the year, when you guys come.” He met Dana when they were 25 years old, waiting table in New York. The Reeves weren’t fancy Hollywood folk, they were just actors who lived on the east coast and their lives were in chaos. Michael says he was petrified walking into Chris’s room. “This was a guy I had played tennis with . . . ” Very soon he realized that Chris was still Chris. Chris didn’t want anything — not his name on a building, not recognition, nothing. He just wanted to get out of his chair.
For the rest of the world, SCI was just not on anybody’s agenda. That changed after Chris’s injury. For the longest time they didn’t actually ask for anything specific about SCI. He did meet with the Clintons and managed to get $10 million, which was better than nothing. Dana was the person who decided that quality of life was just as important to people with SCI as the research. He and Dana used to sit in the back yard going through a series of QOL applications, having a little wine and weeping over the ones that involved children.