Spinraza and Me

For those who don’t know already, I’m disabled by a neuromuscular disease called Spinal Muscular Atrophy type 2. Because certain motor neurons near my spine don’t work properly my muscles can’t get stronger and slowly atrophy as I age. This happens at different rates. Some children who have a more serious form of my disability …

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I came back to California in 1980. The first thing I did was go to the Center for Independent Living. There, I found listings for accessible apartments, personal attendants and help getting my benefits straightened out. I also found a community. Folks who were maybe not exactly like me, but who knew the terrain. They …

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My 50th

Tomorrow will be my 50th birthday. It’s kind of a startling statement to me. 50. I keep getting hit with the realization that I’ve been on this planet a pretty long time. Things that seem really recent like the 80s are a really long time ago for some folk. It is a really long time, …

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