Danielle's Page

Vail Xtreme Hike 2019

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Fundraising Progress

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Raised: $5,395.00

Goal: $5,000.00

My Xtreme Hike Story

Once again, we are hiking (just 20 miles this time) to raise funds to support research into Cystic Fibrosis. As many of you know Ava is thriving at the moment, due to great strides in research, that allows her to live a pretty "regular" life.

Ava's first months were a struggle while we fought to figure out what was causing her to spend so many nights in hospital. Now at age 13, her lung function continues to impress and she shows at over 125% of predicted lung function for her age!

If you want to be inspired, take a look at this video of Ava: https://www.youtube.com/watch?v=wYezTkgb27Q

taken while we were living in Chicago! Now her dreams have moved on and are now more aligned with life in the Colorado Rockies -- she skis, SUP and swims faster than ever before.

Ava's health improvement came just after she was enrolled in a clinical trial for a drug that was originally established through contributions to the Cystic Fibrosis Foundation (CFF). The drug is only targeted for a small population of the 30,000 Americans with CF, but it has delivered results for Ava and gives us hope for the broader CF population. While we have made progress, we still have a long road ahead in our search for a cure.

The CF population in the US is so small that drug companies typically do not invest in R&D and most are funded through campaigns such as this. Today I am writing to you to urge you to contribute to CF drug research. Please support us in the drive to fund more research to transform CF and make it stand for "Cure Found."

We supported the Xtreme Hike in Illinois and are now moving our focus to Colorado and Vail. This is a unique event that empowers hikers to take action and demonstrate their fight in finding a cure for cystic fibrosis in a tangible, emotional and powerful way.

We hope that you will support us. Every little bit helps!

From the bottom of our hearts, thank you.


David (father of Ava), Danielle (mother of Ava), Cecilia (sister) and Ava (now skier)

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