My Xtreme Hike Story
Once a year, the Cystic Fibrosis Foundation (CFF) organizes a hike in the Berkshires. This is an extreme hike of 25+ miles done in one day. Every hiker is hiking for one reason-a cure for Cystic Fibrosis - (CF). This is a terminal disease.
I write this page in honor of my daughter, Shannon, who succumbed to Cystic Fibrosis at the age of 33..
When I first took this hike, I hiked for Shannon. Today, I hike for all children and adults who are now living with CF and fighting not only to live a healthy, active life, but also to stay alive.
In October 2019, the FDA approved a new drug called Trikafta. This drug has now transformed the lives of thousands of people living with CF. I personally have met parents whose children are now on Trikafta. These children's lives have been transformed and the parent's lives as well. The stress a parent is under when a child is sick is enormous. Trikafta is transforming these parent's lives too. But Trikafta is not a cure for CF. We are still fighting for that cure.
This hike is one of the ways our CF community comes together for the sole purpose of supporting the CF community and the Cystic Fibrosis Foundation. Parents, grandparents, siblings, aunts, uncles, and friends do what we can to make it possible for people living with CF to be able to continue living, fulfilling their dreams, their goals, and to be able to just grow up and grow old like we get to.
Our hike is on June 3rd. We already have 50 hikers signed up with many more to come. Every step we take on this hike is a step for the ones we love. Every step is to honor those living with CF, those whose lives have been lost to CF, the doctors, nurses, technicians, and researchers. Every step. And when we are finished after a long day (it takes me 12-13 hours to finish the hike) we can barely walk. Our muscles are in pain, we are limping, and we are overjoyed. We know we have helped.
Will you please consider making a donation to my page to support me and the Cystic Fibrosis Foundation in our efforts to find a cure? Any donation will bring us a step closer to bringing an end to this disease.
I have included 2 pictures under Photo/Video. The first one is me at the finish line last year, and the 2nd one is of Shannon and her dog, Little Man.
Thank you for taking the time to read my page.