2023 United Airlines NYC Half

I am running the United Airlines NYC Half Marathon for Team Boomer and the cystic fibrosis community!

Run the Mile You’re In. This is a pretty common mantra used among endurance runners. I heard it for the first time in December. It changed  my worldview on a lot of things, not just running. I’ll get back to this point in a minute.

On March 19th, I’ll be running the 2023 United Airlines NYC Half Marathon again. This year it will be in support of the great work of The Boomer Esiason Foundation (BEF) as part of Team Boomer. This amazing organization means a great deal to our family as its mission is to heighten awareness, education and quality of life for those affected by cystic fibrosis, while providing financial support to research aimed at finding a cure. Our son Declan (who will likely have just had his 8th birthday on January 27th by the time you read this) has been living with cystic fibrosis (CF) since birth.

A lot has changed in a year for my buddy. Declan is reading the Harry Potter books now instead of watching the movies. He goes on runs with me now instead of being my best sideline cheerleader. He’s attempting to play Seven Nation Army now on the piano instead of blasting it through Alexa. He’s almost as tall as me now. He’s transforming. And, interestingly, so is his cystic fibrosis.

Declan has to take pancreatic enzymes every time that he eats, because his CF creates pancreatic insufficiency. A normal functioning pancreas makes enzymes to break down fats, proteins, and carbohydrates after you eat. It's a key part of your digestive process. Elastase is a measurement of how the pancreatic enzymes are working. When Declan was born, his Elastase concentration was 0. Hence, the up to 16 enzyme pills he takes each day, in addition to his other daily CF meds/treatments. Declan has been on a gene modulator called Trikafta for just over a year now. He takes these pills twice a day. This drug has been a miracle for many people with CF. Declan is no exception. We recently had his elastase levels tested because Trikafta has proven initially to have amazing results on pancreatic function. Declan’s Elastase concentration level…178. A person with a fully functioning pancreas…their level is 200. Remember, he started at ZERO. Declan’s pancreas, and his CF, are transforming. If his levels hit 200, which we will test again in a few months to find out, he could potentially come off of pancreatic enzymes entirely. That’s 16 less pills he has to take a day. That’s transformative, that’s progress, that’s the gift of science.

Now, getting back to the Run the Mile You’re In mantra. To me, it means don’t get ahead of yourself. Stay focused and in the moment. Don’t allow yourself to get distracted by what’s to come. Don’t celebrate prematurely, but don’t dwell on how difficult things could potentially be. It also means don’t forget to take a second and relish what’s happening right now. When folks in Declan’s support circle heard about his pancreas transforming, everyone was blown away, me included. Me, maybe, most of all. But for me, I was blown away only for that moment. There were a  few air high fives, a few incredibly happy tears shed. And then it was back to business. Because, it’s a victory in the moment. Hopefully, this positive and amazing trajectory continues. But hope is a tricky thing, and so is CF. When the next wave of great news comes, I’ll be ready to celebrate. And I’m trying my hardest not to worry about the still looming “what ifs.” So, for now, I’m running the mile I’m in when it comes to CF.

The reason that drugs like Trikafta exist, and that Declan’s life is transforming, is because of organizations like BEF. Consider making a donation today in support of BEF, in support of Declan, and in support of all those living with CF whose lives will hopefully continue to transform.