When I think or rare disorders one thing that pops in my head is Kevin Bacon.  It’s an odd thought, but if you’ve heard of him, then you’ve probably heard of the game “6 degrees of Keven Bacon.”  If you…

I am currently training for the NYC marathon and raising money and awareness for Running for Rare. A few weeks ago I was off to meet some friends for my long run. We meet bright and early ready to run…