Dear Friends and Family,

This June, I will be hitting the trails once again for our 15th annual Xtreme Hike to support the Cystic Fibrosis Foundation.

As most of you know, my daughter Ellie has cystic fibrosis. When she was born in 2005, the average life expectancy for babies with CF was just 31 years old. That number has more than doubled. Thanks to decades of research funded almost entirely by the CF Foundation, babies born with CF today now have a life expectancy of 65.

In 2019, a modulator drug was approved that included Ellie’s specific CF mutation. The medication stabilized her lung function tremendously, but wasn’t tolerated by her body, and we worked to find a solution that was manageable. Last May Ellie began taking a newly approved modulator that has been both effective and tolerated well. She has been able to reduce her daily treatments, and her good health allowed her to spend last summer studying in Barcelona and traveling throughout Europe and Morocco — something we genuinely would not have believed possible 10 years ago!

I remember the fear and urgency our family felt before these medications were available to Ellie. The waiting, hoping, and wondering what the future would hold for her. That urgency has not disappeared; it has simply shifted. Many people with CF cannot benefit from modulators and are still living in that same place of uncertainty.

We hike for those people, and also because these advances are truly extraordinary, but  they are not a cure. Cystic fibrosis affects many organs, and people with CF continue facing issues related to existing damage to their livers, pancreas, and GI systems. Modulators have been a game changer, but they are a stop-gap until a cure is found.

Ellie will be hiking alongside me this year for the second time, and we’re thrilled that her boyfriend Tyler will be joining us as well. We will be hiking not just for Ellie, but for everyone living with CF.     

If you would like to come alongside us in this journey, your donation will help fund life-changing research that improve treatments, and brings us to that ultimate finish line: a cure for all.

Thank you so much for supporting Ellie, our family, and the entire CF community!

With so much gratitude and appreciation,

Jenica, Jonathan, Abby and Ellie