Live your dash

We spent the past 3 days in Washington, DC advocating on Capitol Hill for CF awareness and funding, or hope as I sometime call it, and joining other CF families to celebrate all that we've accomplished and learning about what we need to do next. It isn't often that CF families get together, as for a CF patient one of the biggest risks to your health is being around another CF patient. But when we are together, the parents and grandparents and friends, there is magic. The laughs and the tears and the hope! Oh, the hope. I have met some truly remarkable people over the past few days and I'm happy to be able to call them my friends. I know that no one wants to be on this journey, but I know that we will remain by each others side until we beat this.

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!