“The most terrifying day of your life is the day the first one is born. Your life as you know it is gone … But they learn how to walk, and they learn how to talk, and you want to be with them. And they turn out to be the most delightful people you will ever meet in your life.”  We understand many of you participate in our FSHD research testing to learn more about yourselves and especially at risk family members.  Here we discuss more about the procedure and results and interpretations.  In addition, some more on CRISPR approaches to FSHD and a short FSHD minipig update.