Our Xtreme Hike Story

Since 2009 The Fighting Fish have literally been FIGHTING to raise money for a CURE for Cystic Fibrosis (CF). Over the years we have raised over $70,000 - that all goes directly to the CF Foundation. It all started when my son was diagnosed with CF at 6 months old, and compounded when my daughter was born only a year later, diagnosed at birth. Early on there were countless hospital visits, but today Colin (15) and Katelyn (13) are healthy and active young teenagers! Sadly, that is still not the case for many with CF. Today the Fighting Fish HIKE in the Xtreme Hike - that means 30.1 miles on the Appalachian Trail in ONE day, 3am until we're done.

We humbly ask for your donation - in any amount - towards our team goal of $15,000!!

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Why fight and WHY HIKE?!

Today 35,000 people in the US live every single day battling CF. Many spend at least 2 hours a day receiving nebulized medications and concentrated saline along with chest physiotherapy. This is on top of taking supplemental vitamins, pancreatic enzymes with every meal and snack, allergy medicine to avoid the effects of environmental allergies.

Why all of the treatments?

Those with CF have very thick mucus throughout their bodies due to a genetic defect effecting all the cells in their bodies. This thick mucus mostly effects their digestive and respiratory systems. The enzymes our pancreas easily create and move into our digestive process get stuck in those with CF making them unable to digest fat, leaving them frail and malnourished without the enzymes. It's also very easy for bacteria or viruses to get stuck in this mucus and without these treatments, get lodged deep within their lungs. The goal is to move that mucus up and coughed out so it is never an issue. Unfortunately, many who are now in their 20s are facing the need for double lung transplants, simply because their lungs have spent 25+ years working hard, scarring, and reaching the end of their life.

What are we doing?

The CF Foundation has established CF Care Centers in hospitals across the country, along with satellite locations to help reach those who are too far from these locations. A visit to a CF Care Center typically takes about half a day, every 3 months, and includes an entire team of doctors, from pulmonology, ENT, GI, and others depending on specific issues.

They advocate (along with local volunteers) with Congress to make sure laws are passed impacting federal drug approvals, and other issues effecting Cystic Fibrosis care.

They help fund research for pharmaceutical companies to make sure medications are developed that actually help those with CF lead the closest to a more normal life as possible. These companies are reluctant to invest in research in medications as they would be unable to recoup their investment so the Foundation investments are so essential. With the latest advances, up to 90% of those with CF are benefitting from these medications. There are cases of people coming off the lung transplant list, and many are able to decrease the treatments they are on.

Without the CF Foundation, none of this would be possible.

How is this funded? 

CF is considered an orphan disease due to the low number of people who have it. As a result, it receives no federal funding so for all of these initiatives it is almost solely reliant on funds raised through the various events the CF Foundation and families help organize, including the Xtreme Hike! Again, please consider a donation - in any amount - towards this incredible cause and THANK YOU so much!