Sunday, February 26, 2012

The future is bright indeed...

Welp, back at it. Realize it's been a while, but I thought this would be a nice time to write again. I want to share some thoughts based on recent accomplishments in the CF world as well as some of this past week's events. Living with a few chronic illnesses you kind of live with what I like to call hopeful skepticism. You're hopeful that treatments and cures will come along, but also skeptical that someone will unearth a medical miracle at the same time. You see, for the first 27 years of my life there were advancements in care that made life easier or fought off bacteria in a different way, but nothing that ever really changed the way we fight CF. That was until earlier this year when a completely different kind of drug was approved. I won't go into too much detail about how it works, but it's called Kalydeco and essentially it attacks the faulty gene and helps improve the function of a defective protein in CF patients with a specific genetic mutation (there are many). Click this link if that doesn't make any sense: They explain it better than I do and no, I don't have this mutation, but it's a huge and exciting step in the right direction. Vertex is working on developing medications for other genetic mutations.

So to this past week....on Monday, I was invited to "Kick for a Cure" a fundraising event that the Stack Family and CFF had organized with the New York Red Bulls training staff. It was organized because Jacqueline, the youngest of the Stack children, has CF and is an avid soccer player. I too have CF and am an avid soccer player so I was thrilled when the invitation was extended to me. I didn't really know what to expect. I figured I'd go, kick the ball around, say hi to the family and then go home, but what I got was much more. It was great to see Jacqueline out there on the soccer field running, competing, having fun and smiling - just being a kid. Even though we are years apart we both know how hard it is to take care of yourself manage CF and to see someone that age with such strength and courage and determination was truly inspiring. Then I spoke to her parents. Looking back at my life, I don't really remember when I realized that CF didn't only effect me, but also my entire family and we were going to beat it together, but it took less than 1 minute for me to realize how involved and strong her parents are as well. Fundraising and making people aware and doing everything in their power to help make Jacqueline's life easier. It also reminded me a lot of my family and how lucky I am to have them in my life. Truly, truly a great couple hours and a really committed and inspiring family and story.

And then last night I attended the annual BEF Celebration of Life Gala. The event was absolutely fabulous and I could talk about it for a very long time, but I want to share one part of the evening with you. My friend Kevin, who also ran the marathon this past year and has CF, and I were chatting about running and how we were feeling when this gentlemen behind us asked how our FEV1 is impacted during training. Now, this is a pretty clinical question so my initial response was, "Are you a doctor?" His said, "I'm Eric Olson, the CF Program Leader at Vertex" - the same company that is working so hard to make our lives easier. A normal reaction might have been "thank you" or a handshake, but instead I gave him a hug. Yea, maybe a bit overzealous considering I'd just met him, but this man is working tirelessly to make mine, Kevin's and many others lives easier. So I thought a hug was appropriate. Anyways, we chatted for an hour or so with him and another gentleman from Vertex, Ian Smith, and what made the conversation even more remarkable was how much they actually cared and how passionate they were about their work. How it was more than just their job. How badly they want to make our lives easier. How truly engrained they are in finding more solutions like Kalydeco and how they aren't going to stop until they do. Really a breath of fresh air (pun intended). Thank you.

And As most of you know, the CF community is fairly small. We rely on fundraising and donations and awareness and research to drive things forward. It's really a collaborative effort and it's amazing to see the dedication and hard work of so many people from so many different backgrounds from different companies working together to find a cure. This is what gives me hope. This is what allows me to really think about the future long-term and not think what if? This is what will one day make my life and the lives of easier a whole lot easier. So for now all I can say is thank you and that I'll continue to do my part!

And on a side note, a big congratulations to Jerry Cahill and Kevin Dwyer on their awards last night at the gala. Two outstanding and inspirational individuals. They truly are role models and very deserving of last night's awards.


  1. Wow - you continue to be a star!

  2. Very well said Steve! I also had a great time at the BEF Celebration of Life Gala. It was such an impressive event and I really appreciated being able to attend. Keep up the good work!