“Cholangiocarcinoma sucks, it’s a tough, tough cancer. Being difficult to diagnose, often diagnosed in later stages, and having limited treatment options, we knew we wanted to see how we could maybe help change that for future CCA patients” explained Jan Meyer, a current cholangiocarcinoma (CCA) patient. Recently, the Cholangiocarcinoma Foundation had the opportunity to interview Jan and her husband Dean, to better understand their CCA journey and thank them for their $125,000 donation to the Foundation.
Jan and Dean Meyer currently live in Wilmington, Delaware. Though Jan is a CCA patient, this was not her first contact with this cancer. Jan’s Mom also had CCA and passed away in 2011 in her 79th year. Jan said she always hoped if she ever got cancer she would fight her battle with the same dignity, class and strength of her Mom. She never dreamed she too would be diagnosed at age 54 with Stage 2 intrahepatic cholangiocarcinoma (ICC).
“I came into contact with the Foundation after my own CCA diagnosis through the Facebook Cholangiocarcinoma Warriors group. I met a couple of Warriors, Sarah, Leena and Cait, who were so kind and took me under their wings. All three have now sadly passed away and are greatly missed in the CCA Warrior Family.” Jan explained.
There are several Facebook groups specifically for cholangiocarcinoma patients or caregivers. Jan also shared that through these Facebook groups, she became aware of the Foundation’s website and their many resources available to patients.
“These Warriors, would message me, and check in on me. It was so comforting to have someone to ask questions, like if this was a normal reaction to treatment and how to deal with side effects…fellow Warriors give great advice and support” shared Jan.
When asked why they chose to make a $125,000 donation to the Foundation, Jan explained, “We were working on our wills and said, wait a minute, if we can put some towards CCA now, it may, but probably won’t extend my life, but it may help the amazing Warriors that I have met through the Warriors pages and become good friends with.”
Dean added, “We were also able to name a research grant after Jan’s Mom, “The Margaret M Brown Research Fellowship”, which was pretty meaningful to both of us. It seems like we are at a point with this disease that research can make a real difference and wanted to support a few of the Cholangiocarcinoma Foundation projects with our donation”.
Jan and Dean both believe it is a critical time to invest in the Foundation. With 26 targetable mutations, the tide is turning and there is more interest in CCA from researchers and pharmaceutical companies who are currently developing new treatments which are critical for patients.
“People don’t understand that new treatment options for patients are built on basic research resources, things like cell lines, pdx models and organoids. We want to help accelerate the availability of these resources to the research community globally. We want to see the same kind of enormous progress being made in CCA that has been made for some of the more well-known cancers, but first we need to invest in these basic resources. This donation will help the global research community and thus the global patient community. Between the genetics, data and research going on, I think there are some real game changers coming along,” explained Dean.
“The Foundation is so grateful to Jan and Dean for their generous donation” shared Stacie Lindsey, CCF’s President and Founder. “With their support, CCF recently awarded $365,000 in Research Fellowship awards, which is the largest funding cycle to-date. This research will help us put together the building blocks that will assist researchers and industry to make innovative new treatment options available to patients. We could not do this without the generosity of great friends and donors like the Meyers”.
If you would like more information regarding programs or services at CCF, or if you would be interested in partnering with us to accelerate research, please contact CCF’s Development Officer, Jordan Giles at Jordan.Giles@cholangiocarcinoma.org.