From the entire Ciitizen to our dear partners at the Cholangiocarcinoma Foundation, we could not be more honored to partner with you and for the incredible work you drive. What an incredible conference #ccfac24 and can't wait for the next one!
Ciitizen has had the privilege of partnering with the Cholangiocarcinoma Foundation since 2019 as the backbone of their real world data registry. In the summer of 2019 at the ASCO conference in Chicago, Stacey Tinianov, MPH, BCPA introduced me to Stacie Lindsey who leads the CCF organization. At the time, their team was a few incredibly dedicated individuals - many part-time - working towards an incredibly meaningful goal of finding better treatments and support for patients with what was historically a largely ignored condition. There were ZERO treatments on the market beyond the standard chemo regimen; research was minimally funded or advanced; and most of all, patients had no place to go to get true support and navigation. This week, I was lucky to attend Cholangiocarcinoma Foundation's annual conference. My team has gone every year but for one unfortunate reason or another, I have never made it there. Mind. Blown. Today, the CCF team is 30+ full-time, dedicated team members; there are multiple approved therapies on the market including the first first-line approved therapy; every major researcher and KOL was at the conference alongside dozens of patients and partners; and the team has made massive inroads with the FDA on unique clinical trial designs and approaches that will bring therapies to market faster. To all my fellow entrepreneurs who share their trials and tribulations of building a company (and I promise I hear you!), it is NOTHING compared to what these incredible nonprofits do. No VC funding, no big stock grants to throw to folks, no clear "ROI" to work towards, and if you think we feel rejection...go talk to nonprofit leaders. To Stacie Lindsey, Melinda Bachini and the entire Cholangiocarcinoma Foundation, I am forever grateful that we have been part of your journey and am in awe of what you have built...and I know we are just getting started! #ccfac24 #curecca #ccahope #hopeinresearch #cholangiocarcinoma #advocacy