The COVID-19 pandemic has changed the way we do business, the way we interact with one another, and other tangible aspects of our work and personal lives. The pandemic has also provided many of us with much-needed time for personal reflection. Often, when we have the opportunity to take a step back, or in this case when we are forced to step back, the result of our thoughtful reflection can be an opportunity to slingshot forward.
A colleague from another nonprofit organization recently shared that she admired our work because “we were willing to take chances.” This gave me pause. I thought, of course we take chances, because when you are trying to find a cure for cancer, especially a rare and underfunded cancer such as cholangiocarcinoma (CCA), you do not have a lot of viable options.
The Cholangiocarcinoma Foundation (CCF) and its stakeholders have taken many chances. We have taken on small and emerging industry and biotechnology partners. We’ve taken chances on young, innovative researchers and clinicians. We’ve taken chances with brand-new, and sometimes unproved, technologies and companies, and we’ve taken chances on groundbreaking collaborative opportunities and ideas. Taking chances is in the DNA of our organization. “Why?” you may ask.
Because we know that the trajectory of CCA must change in significant and meaningful ways. The global statistics do not bode well, which means that we cannot keep doing the same thing and expect a different result. We must be exceptionally forward-thinking and sometimes potentially disruptive.
The CCA community realizes that we must take chances. We must be innovators. We must think in different ways from others and do things in a different way from before. We simply cannot look at CCA in the way it has been looked at in the past, adhere to yesterday’s standards, and expect to be able to bring leading-edge, innovative solutions to patients.
Patients with CCA are depending on us, and that means that now, more than ever, this community of stakeholders must pull together in a united, global way. We must pool the data, share our resources and expertise, and consistently work together to flush out the very best ideas and bring them to the forefront. We must also engage in meaningful discussion and debate on important issues regarding CCA.
We will have to take risks, but we need to take the right kind of risks, the kind that look at the space in which we are currently living professionally and ask questions such as:
Clayton Christensen, MPhil, MBA, DBA, a Harvard Professor and respected and innovative business professional, said, “Amateurs compete while professionals create.”
At CCF, we operate from this belief. I believe that at our very core we are all creators. However, we have been put into a competitive space, with predetermined rules, and we have continued to push forward without question.
It is difficult to understand why institutions, companies, or nonprofit organizations are competing in a rare cancer space, in which we have increasing global diagnoses, deaths, and a wholly inadequate standard of care. CCF is an ardent proponent of collaboration, which is one of our founding values. It is a key trait in every stakeholder, partner, and opportunity with which we engage.
CCF does not compete, because we are focused on being creators. If we do not see a path forward, we create one; if we do not have a relationship with a key leader, we pursue one; and if a door is closed to us, we work to create a way around. We do not have another choice, because there is an urgency to this work that we simply cannot ignore. We will not wait for someone else to illuminate the path ahead; we will create a path and then help others to navigate it.
The CCA community is extraordinarily collaborative and innovative. This year, we have seen many remarkable results from these efforts, including the few examples listed below.
Three companies from our industry council, in coordination with the US Food and Drug Administration, are working on a groundbreaking clinical trial, which has the potential to change the face of clinical trials in the rare cancer and rare gene mutation spaces.
The CCF has funded a CCA-specific portal on the cBioPortal for Cancer Genomics platform. This is an open-access, open-source resource for the interactive exploration of multidimensional cancer genomics data sets. This effort will serve the entire global research community and will foster rich collaborative opportunities.
Our partner, Ciitizen, has created an incredibly advanced clinical trial finder for patients with CCA through a collaborative effort with CCF. This type of innovation is provided free to patients and researchers because of a unique nonprofit–for-profit partnership. This partnership will allow patients and researchers to engage collaboratively in CCA research in a way that has never been possible before.
However, in our efforts to create, CCF will never shift our focus toward building an organization for the organization’s sake. The needs of patients will always come first. The science, research, and advocacy that support patients with CCA continue to demand that we take chances and calculated risks. We will take those risks, because the lives of the patients in this community depend on it.
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