The National Pancreas Foundation (NPF) is celebrating its 20th anniversary, having been created in 1997. The NPF was co-founded by Jane Holt, a pancreatitis patient, and Patter Birsic, who lost her sister-in-law to pancreatic cancer. The experiences of both the Holt and Birsic families led to the NPF being the only organization dedicated to all diseases of the pancreas, with a focus on pancreatic cancer, pediatric pancreatitis, acute pancreatitis and chronic pancreatitis.
The NPF mission is to provide hope, with a focus on research, education, advocacy and support for pancreatic cancer and pancreatitis patients and families. To fulfill its mission, the NPF raises funds from which grants are made directly to researchers seeking to resolve the challenging medical problems of pancreatic diseases. A National Patient Registry has been developed for individuals suffering the isolating and debilitating conditions associated with pancreatic disease. The Registry has a patient portal and an institutional partnership component. The NPF also has a program called the Animated Pancreas Patient. This program has animations and expert interviews on all forms of pancreatic disease, including pancreatic cancer and clinical trials. The clinical trials module can be of great benefit to a newly diagnosed patient, as it explains what clinical trials are and the terminology that is used, as well as why they are important to consider – all in an easy to understand format.
The NPF is looking to work with the other organizations of the WPCC in making sure they are aware of its programs, advocating together for greater funds invested toward pancreatic cancer research, and to learn about the programs that are available to pancreatic cancer patients from other organizations.
“We are looking forward to the next WPCC meeting,” said Matt Alsante, executive director, “where we can discuss how we can have a unified voice to not only advocate for pancreatic cancer patients in November, but how we can work together all year long to make sure the voices of the patients and families we represent are being heard.”