Archive for April, 2019

April 23 is FOP Awareness Day

April 20th, 2019

Read More


Hi friends. We're coming up quickly on FOP Awareness Day, April 23 - a day proclaimed by the International FOP Association (IFOPA) to spread knowledge of the disease fibrodysplasia ossificans progressiva. My daughter Miranda, who is 14, has FOP, so this is an important day for us. I've said it before, and I'll say it again... FOP is super, duper rare. The conventional wisdom is that about 1 in 2 million people has FOP. Since there are 7.5 billion people in the world, that means there are roughly 3,750 FOP patients. Except guess what? The IFOPA and the world experts on ...