Rare Disease Blog

The past two weeks in voluntary self-quarantine have given me far too much time to think about the irony of being disabled during a pandemic. On the one hand, living with a rare disease, Spinal Muscular Atrophy, places me in…

I have always had an internal pressure to be *actually impressive*. Not inspiring, not motivational. Nope, I have always wanted to be realized for talents unrelated to my physical ability – for someone to say, “Wow, that’s actually impressive.” When…