Extreme Hike Will Benefit Cystic Fibrosis Foundation - The Missourian: Feature Stories

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Extreme Hike Will Benefit Cystic Fibrosis Foundation

Washington Team Has Goal of $7,500

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Posted: Wednesday, July 10, 2013 6:32 pm

A trio of Washington residents are in training now to complete an Extreme Hike — 30 miles in one day on the Ozark Trail in Potosi. The hike, set for Sept. 14, will benefit the Cystic Fibrosis Foundation (CFF).

The team includes Michelle Kasmann, Mike Winkelmeier and Sara Maune. They call themselves Winkel Warriors.

They do training hikes every Saturday with a group in St. Louis. Each week the mileage increases.

Their motivation is personal. Winkelmeier’s older brother, David, who is 40 years old, lives with cystic fibrosis.

When he was born, his parents were told that he might live to be 6. He maintains a blog about his experience at www.therace-hebrews12.blogspot.com.

Two years ago, David was at a point where his disease was progressing significantly. He was placed on a lung transplant list and received a double lung transplant.

No doubt part of what has helped David live decades longer than doctors expected are strides the medical community has made for CF patients as a result of fund-raising events like the Extreme Hike, said Kasmann.

The Winkel Warriors have set a team goal of raising $7,500.

Donations of all amounts are welcome. For more information or to make a tax-deductible donation online, people can visit the team’s website, http://www.cff.org/LWC/WinkelWarriors. They also have a Facebook page (WinkelWarriors).

Facts About CF

• CF is an inherited disease of the lungs and digestive system that affect approximately 30,000 children and adults in the United States (70,000 worldwide).

• Symptoms are caused by a defective gene whose protein product produces thick mucus that clogs the lungs and leads to life-threatening infections. The mucus also obstructs the pancreas and prevents the absorption of necessary nutrients.

• While great strides have been made by the CF Foundation, at least one life a day is lost to CF. It is this country’s most fatal genetic disease among children and young adults.

• In the 1950s few children with CF lived to attend elementary school. Today many people can expect to live into their 30s, 40s, and beyond.

CF Foundation

Established in 1955, the CF Foundation is a nonprofit, donor-supported world leader in the search for a cure for CF.

The foundation’s drug development model has been recognized by Harvard Business School, Forbes, The New Yorker, and Bloomberg Business Week.

The foundation is a pioneer in research, advocate for CF, steward of donations and caregiver of loved ones.

Nearly every drug available in the treatment for CF was made possible through the foundation’s efforts.

The CF Foundation released the first FDA-approved drug in 2012 that treats the underlying cause of CF.

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