My Xtreme Hike Story

I just finished Cystic Fibrosis Xtreme Hike 10!

On Sept. 21, I hiked 24 miles in the mountains of West Virginia to raise money for CF, a fatal lung and digestive disease that affects my family. I'm proud of my feats of strength over the past several years of mountain hiking for CF, especially since, let me tell you, we're not getting any younger. Approximately 30,000 Americans live with CF, which has no cure and a median survival age of 61 for people born within the past five years. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. They include my niece Colleen Lusk, who died in October 2013 at 16, and her sister, my niece Erin Lusk, who started eight years as a first-grade teacher this fall.

CF is a genetic disorder that causes the accumulation of thick mucus in the lungs and around the pancreas, causing suffocation, infection, and digestive and nutrition absorption problems. It is fatal and there is no cure. Over the past several years, the progress that has been made toward finding a cure and treating the disorder is amazing. A cure we are seeking is close, but we must continue to fund the research.

From Colleen and Erin's parents, Hal and Suzanne:

"Our youngest daughter, Colleen, passed away on Oct. 24, 2013, from cystic fibrosis (CF). Colleen was a high school junior and would have turned 17 on Nov. 18, 2013. We miss Colleen every minute of every day, but we take solace in knowing that she can finally breathe easy and be free of all the pain she endured because of her CF. Colleen fought bravely through many obstacles including a collapsed lung, multiple vertebrae fractures, a clotting disorder, diabetes requiring daily injections, numerous picc lines, and a gastrostomy tube. Through it all Colleen maintained a positive attitude and a strong desire to live life to its fullest. She actively participated on her high school speech and debate team and appeared in several high school plays and musicals. The outpouring of love for Colleen from family, friends, and the community was an incredible testament to Colleen's impact on everyone who met her. Our town was covered in purple ribbons. Her high school student body held fundraisers and a candlelight vigil. The volleyball team, football team, dance team, theater group, and others all paid tribute to Colleen. Other high schools and her grade school also honored Colleen at various events."

Chris again...Erin has been doing fantastic since she started taking the miracle drug Trikafta, developed through research funded by campaigns like mine. Just before Erin started, she was researching lung transplant options. Now she not only does not need a lung transplant, but she's run a 5K race -- that's 3.1 miles! She no longer needs as much daily treatment to manage symptoms and provide enough nutrition, and she's feeling generally much better.

Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. Your gift will help add tomorrows to the lives of people with CF. Your gift is 100 percent tax deductible.

THANK YOU FOR YOUR SUPPORT!