I think that one of the most humbling things for me to experience at this meeting, now for the second year in a row, is the continued support of those who have experienced loss at the hand of this disease. Those parents, just like Martin and I, who dedicate our lives to saving our kids, doing whatever it takes, shoving those square pegs into round holes and creating hope any chance we get, and yet they weren't able to save their child. They show up with smiles on their faces, giving speeches and awards, hugging friends and fighting. These people have continued to fight for my son even after losing their own, and there is nothing on this earth more humbling than their camaraderie. It's brings to life the harsh reality of this miserable disease, that there still isn't a cure. The people who attend this conference every year have one very important thing in common: hope. We have such tremendous hope for the future, for our friends and our families, that they can and will win this fight.
I wanted to share a song that a group by the name of Branch & Dean sang during our dinner reception on the first night. The song is called "The Dash", and it was dedicated to the singers son who lost his battle with Cystic Fibrosis just last March at 23 years old. If these aren't words to live by, whether your life has been affected by a chronic illness or not, I don't know what is. I implore you to listen, and to live your dash.
With the lyrics to that song fresh in your mind, take a look at my Storified version of the 2014 Cystic Fibrosis Volunteer Leadership Conference. I'm making the most of my dash!