Jill Higgins

What is Cystic Fibrosis?

There is currently no cure for Cystic Fibrosis. Cystic Fibrosis is an inherited disease that mainly affects the lungs, pancreas, liver, intestines and sinuses. If you have CF, your mucus becomes thick and sticky. It builds up in your lungs and blocks your airways. The buildup of mucus makes it easy for bacteria to grow. This leads to repeated, serious lung infections. The symptoms can vary from person to person, and as people with CF live longer than ever before, their disease can become more complicated, leading to serious health issues. Enzymes are taken to help store fat eaten in food, otherwise it would be hard to maintain a healthy weight and all CF kids require extra salt since they sweat it out.

The Cystic Fibrosis Foundation has made extraordinary progress — including fostering the development of more than a dozen CF treatments — but these treatments are not a cure and not everyone can benefit from them. We must keep going.

Nolan's Story ...

Nolan was diagnosed with Cystic Fibrosis at 8 days old. In 2013, he underwent a sinus surgery to drain his sinus cavities of mucus. In 2017, he was diagnosed with Liver Disease. Nolan has the most common CF mutation (DDf508), which has allowed him the opportunity to gain access to the best meds provided by the foundation - Orkambi, Symdeko and now Trikafta. At 12 years old, Nolan now takes over 20 meds, 40 minutes of vest treatment and 30 minutes of inhaled neb treatments daily. 

From 2013-2021, we have participated in Great Strides and Cycle for Life events. Due to your support, our family and team has been able to fundraiser over $72,600. We've taken some time off and are looking forward to getting back at it this year. Thank you in advance for anything you can donate. All donations are tax deductible and you're funding research for updated treatment for not only Nolan, but other CF'ers.

We'll be walking on May 5 at Whiting Lakefront Park. Let us know if you'd like to join us.