Living with Epidermolysis Bullosa: Rare But Not Alone

By Megan Barron: There comes a point in every child’s life where they hit an age of self-awareness. They start to see themselves in relation to the world around them. For those of us who live with a rare disorder, that age of self-awareness is… Read More »

Living With Lou Gehrig’s Disease, Blocked From Drug Trials

By Catherine G. Wolf: I am in my seventeenth year with ALS, also known as Lou Gehrig’s disease — more than half of my younger daughter’s life. I am a quadriplegic and dependent on a ventilator to breathe. I’m one of the 10 percent who… Read More »