Dave Fleischer’s 15,000-mile journey turned out to be more impactful than he anticipated. He traveled nationwide to spread awareness about cholangiocarcinoma, genetic testing and getting second opinions.
When Dave Fleischer’s daughter, Sarah, was diagnosed with cholangiocarcinoma, he had never heard of the rare cancer before. After Sarah’s death in 2018, Fleischer made it his mission to spread awareness – and raise funds – for the disease. He’s doing just that by way of a 15,000-mile road trip across the United States in honor of the Cholangiocarcinoma Foundation’s 15th Anniversary.
“Generally, the response is, ‘cholangio-what?’ To me, it’s an 18-letter word that you never want to know about,” Fleischer said in an interview with CURE®.
When he took the interview, Fleischer was in his car, somewhere in Kansas, after having driven 12,000 miles and visiting 41 states. He still had a journey ahead of him, but at that point, he had raised nearly $40,000 and was confident that the number would grow.
The journey started out as a simple road trip to visit the people who helped Sarah along the way and morphed into a cross-country trek in which Fleischer would visit all 48 contiguous states. In particular, he visits many of the towns and cities called Hope, and sparks conversations with its residents about what the word means to them.
When he meets people on the road or through interviews, Flesicher also spreads the word about the importance of genetic testing. In fact, the car that he is driving has a decal on it with information from biomarkersmatter.org.
“Especially (people diagnosed with) rare cancers should have genetic testing done,” Fleischer said. “That, I think, is one relevant (conversation) beyond just speaking about cholangiocarcinoma.”
Flesicher also advocates for people to seek out second opinions and – if diagnosed with a rare disease – find a specialized medical team.
“Some people don’t want to get second opinions because they believe everything they hear or they don’t want to offend their doctor, which I think is very wrong,” he said. “And once you’re diagnosed, go to a treatment facility that sees this (disease) repeatedly, not just once in a while.”
Fleischer said that his family was lucky. When Sarah received a diagnosis of cholangiocarcinoma, her doctor knew that it was rare and referred her to a specialist. Living in New Jersey, she had the advantage of being within driving distance from top medical centers in New York City.
But regardless of where people live, organizations like the Cholangiocarcinoma Foundation are helping to improve the lives – and outcomes – for patients with rare diseases.
“(In 2006,) there was a commitment made to start the foundation and make sure that there was research and collaboration with patients and the medical profession to do much more than was currently being done,” Fleischer said.
Looking ahead, he is hopeful that things will get even better for patients with the disease.
“You hope for a cure, because there isn’t one right now. But even just improving the lives – the quality and quantity of people’s lives – who are diagnosed with it, that’s first and foremost,” he said. “But finding a cure would be incredible.”
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