Support for the Cholangiocarcinoma Foundation (CCF)

Over the past year and a half, Jonah was very involved in the Cholangiocarcinoma Foundation (CCF). He was a mentor to those who shared his diagnosis, and he helped provide them with support on their journeys. Additionally, Jonah had spoken to the Foundation about bringing his skills and experience to provide tax support for individuals who were also living with a terminal illness. This past April, Jonah was scheduled to speak at the Cholangiocarcinoma conference; unfortunately, he needed to cancel his trip at the last minute as he started a new treatment protocol earlier that week. This conference is an opportunity for patients and doctors to meet together to discuss new trials, new treatments, and new research, and work together to support each other. Sharing and understanding new trials and research is critically important, especially with rare cancers like cholangiocarcinomaimportant.

Side note: Jonah heard that his oncologist from MD Anderson sang karaoke during one of the evening events, which he thought would have been the coolest thing! Jonah loved an opportunity to sing and would have jumped up there himself, belting I Need You Tonight or Paradise by the Dashboard Light.

What Is Cholangiocarcinoma?

Cholangiocarcinoma is a rare, aggressive cancer that often shows little to no symptoms before its diagnosis. The long-term survival rate is poor, and treatment options are limited. According to The Cleveland Clinic, those who are diagnosed with Cholangiocarcinoma in its later stages have a 5-year survival rate between 2-3% (symptoms include jaundice, itchy skin, abdominal pain, weight loss, and others).. Finding new treatment options and more methods for early detection are critical, as the current standard of care has only been in practice in recent years.

For Jonah, there was also a potential connection between his ulcerative colitis (which may have led to Primary Sclerosing Cholangitis or PSC, and therefore possibly the precursor to his Cholangiocarcinoma). There is no cure for PSC, only symptom management. Did you know that Crohn's can also lead to PSC? Jacob was diagnosed with Crohn's a few years ago, and, given Jonah’s history, Jacob will require additional monitoring throughout his life to monitor him for PSC, cholangiocarcinoma, and other gastrointestinal cancers.

Join our Fight

Why am I sharing all of this? Because together we will continue Jonah’s work by raising $85,000 to establish a research grant in Jonah’s honor! The grant will be given out at the Cholangiocarcinoma Conference in May 2026 in Salt Lake City (fingers crossed there is not a lacrosse tournament the same weekend as I would like to be there…not sure about the karaoke part).

Because Jonah Would

A Fundraiser for Cholangiocarcinoma

Because Jonah Would Benefit