2 83 days until Rare Disease Day. Hello friends, happy Monday. I hope you had a restful weekend. I am going to share a voice recording...

Here’s the thing: I’ve been meaning to tell you this story for weeks now, but it’s hard, because I don’t know how to explain these things...

Friday July 24th, 2020 9:30 am “I can drive,” I say to Bianca as she prepares me, dressing me with the robe she used the last time she...