Cholangiocarcinoma, or bile duct cancer, is a vicious, lethal cancer that affects about 10,00 Americans every year. But the federal government's funding for research into this disease is insufficient, so patients themselves and a small foundation are raising money to help find a cure.

Last month, Janice Meyer and her husband, with the help of the Cholangiocarcinoma Foundation, sponsored a 5K fundraising event that attracted more than 500 participants and raised more than $60,000 for this effort. It was the third such event sponsored by Meyer, who was diagnosed with cholangiocarcinoma in 2018.

Altogether, she and her husband have raised and personally contributed nearly $400,000 for this research, and they are determined to reach the $500,000 mark.

Later this year, Jonathan Whitton, 60, who's wife, Laurie, died from the disease, plans to swim the 21-mile English Channel. The swim, called "21 Miles of Hope," has a goal of raising more than $100,000 by year's end.

There are many other such initiatives. Last year, we traveled virtually with Dave Fleischer, whose daughter, Sarah, was taken by the disease, as he traveled across the nation on a "Journey of Hope" to raise awareness and funding for cholangiocarcinoma research. He raised more than $45,000 for that effort.

In this episode of The Lean to the Left Podcast, we hear from Janice Meyer about her journey with the disease, how she's working to help find a cure while battling the cancer herself, and from Meredith Shirell, who leads the Cholangiocarcinoma Foundation's fundraising efforts.

"The National Cancer Institute estimates that cholangiocarcinoma will be the third deadliest cancer in the U.S.," says Sherill on the podcast. "The Foundation's mission is to find a cure and improve patients' quality of life."

This year, the Foundation has funded 11 research fellowship awards for cholangiocarcinoma research, Sherill says, trying to fill the gap left because of insufficient federal funding. In 2020, the National Institutes of Health financed 291 liver cancer research projects with about $130 million, but only 12 were specific to cholangiocarcinoma with just 3.4 percent of those dollars, or about $3.9 million.

So, volunteer fundraisers -- often patients themselves -- join with the Foundation to fill the gap -- to help provide the money needed to find a cure for the disease that is all but certain to claim their own lives.

Coming up July 24-30 is another Foundation-sponsored event called "Moving for the Cure," which allows participants in any area, of any age, and of any athletic ability to raise money through an athletic event of their choosing. Participants can choose to run, bike, walk, play a game of volleyball, host a dance party, or rollerblade. Move with friends and family or move on your own! It's a great way to help find a cure and have fun at the same time.

All of this, says Meyer, provides hope for the patients.

"When you first get that diagnosis of cholangiocarcinoma your hope is sucked out of you the second you go online and start researching," she says. "The statistics are staggering and terrifying. I knew early on I was in for the fight of my life."

Take a listen...

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