My Xtreme Hike Story

Our daughter Abigail (almost 14) and son Aiden (8) were born with Cystic Fibrosis, a chronic disease caused by a faulty protein in the cells of their bodies that leads to improper regulation of salt across the cell membrane. This manifests in several different health complications, both respiratory and digestive, that we must manage in their daily lives.

In 2019, a new drug therapy called Trikafta was approved by the FDA for adults with Cystic Fibrosis. The therapy works to correct the malfunctioning protein (the protein that causes the symptoms of CF) at the cellular level, and has been an absolute game changer for many people with CF. I remember hearing about this miracle drug, and a specific story of a patient who had struggled through regular hospitalizations for respiratory exacerbations so severe that she couldn’t run more than ½ mile without doubling over to catch her breath. On Trikafta, that same individual began training for long distance running, began regularly participating in races, and even completed a half marathon. This was a miracle drug we had been waiting for.

Two years ago, Abigail and Aiden were able to start taking Trikafta. Since then, the results from studies that followed patients on Trikafta have shown great results. At the beginning of summer this year, our pulmonologist gave us permission to drop from two to one daily treatment. This has been another life changing experience for our family. It seems silly, but not having to wake up an extra 30 minutes early before school every morning, not having that extra (big) item on our morning things to do list, not having to fight that battle on mornings when they just don't feel like dealing with it-has been AMAZING. We can start the day peacefully and fit treatments in after school. We are so grateful for that.

How have we gotten to this point? Research. The leadership and perseverance of the Cystic Fibrosis Foundation, an organization that didn't give up when big pharma companies weren't interested in taking on Cystic Fibrosis because the patient population was too small. Undeterred, they raised funds and initiated their own research and development programs. 

Our family are beneficiaries of their hard work, their tenacity, their resolve to keep fighting until CF stands for Cure Found. While Trikafta works well for some patients, it doesn’t work for all. With this in mind, the CF Foundation continues to sponsor and conduct research on alternative drug therapies that target other CF gene mutations. The CFF is committed to continuing on their path until CF stands for Cure Found. We are committed to doing our part to support their work, and the annual Xtreme Hike event is our opportunity to ask friends and family to support our fundraising efforts as we walk the miles, rain or shine, hot or cold, sunshine or clouds. We are raising money in hopes that our kids will walk a different path than those CF patients who have come before us. We are walking in memory of community members who have lost their battle, and with determination to ensure that future generations will live a long and healthy life, that they will outlive us and go on to do amazing things!

Many of you have been extremely generous with your time, your money, and your prayers over the past 14 years that we have been in this fight against CF, and for that we are incredibly grateful. It means so much to Tom and I to have your time, your solidarity, and your funding to fight this disease. THANK YOU for your continued support! We are gearing up for the 30-mile Xtreme Hike on September 30th in the Kettle Moraine State Forest. Knowing that we have your support will make the miles go by more easily!