About the Pancreatic Cancer Action Network
At the Pancreatic Cancer Action Network, we understand the many challenges facing those affected by pancreatic cancer. The organization was founded by three visionaries in 1999 as a small, non-profit, 501(c)(3) patient-based advocacy organization. Now with our national office in Manhattan Beach, California, and a Government Affairs & Advocacy office in Washington, D.C., the organization fulfills its mission through a nationwide network of people dedicated to working together to advance research, support patients and create hope for those affected by pancreatic cancer. Under the direction of President and CEO Julie Fleshman, JD, MBA, the Pancreatic Cancer Action Network comprises a national Board of Directors, a Scientific and Medical Advisory Board and a staff dedicated to fighting the disease.
The organization offers a comprehensive range of programs and services, creating hope and support for the pancreatic cancer community through research, patient support, community outreach and advocacy for a cure. These programs are outlined below.
We fund a robust research program using a peer-reviewed system administered through the American Association for Cancer Research. Our goal is to fund innovative research, grow the number of researchers directly working on this disease, foster collaboration across disciplines and institutions, and act as a facilitator in the research community to expedite scientific progress that benefits patients.
Since 2003, we have awarded 110 research grants totaling nearly $23 million. In addition to growing the field of investigators focused on pancreatic cancer, this funding answers important scientific questions and helps foster collaboration across disciplines and institutions.
Government Affairs & Advocacy
With an office in Washington D.C., we educate elected officials about pancreatic cancer and the need to increase federal research funding dedicated to studying the disease. Our advocacy efforts have helped to increase funding for pancreatic cancer research from the National Cancer Institute from just over $17 million in 1999 to nearly $105 million in 2012, an $87.5 million increase.
We actively take our fight to Congress by continually working with elected officials to help them understand why increased spending for pancreatic cancer research is critical. We train volunteer advocates around the country to respond to action alerts and urge their members of Congress to support our cause. Each year we hold an Advocacy Day that attracts hundreds of advocates to Capitol Hill to meet with their members of Congress to deliver our message about the need for more federal resources for the fight against pancreatic cancer.
These ongoing strategic advocacy efforts have resulted in the passage of the Recalcitrant Cancer Research Act, formerly known as the Pancreatic Cancer Research and Education Act. The landmark legislation, signed into law by President Obama in January 2013, requires the National Cancer Institute (NCI) to examine its current research efforts on cancers with very low survival rates and work to develop early detection methods and better treatment options to help improve outcomes for those diagnosed with the most deadly forms of cancer, including pancreatic and lung cancer. Ahead of schedule, the NCI has already released its scientific framework, or strategic plan, for making progress on its pancreatic cancer research initiatives.
Our organization provides a unique and highly lauded approach to patient support through an innovative program called Patient and Liaison Services (PALS), which provides the latest research and treatment options to patients and their families. When people call PALS, they are connected with a dedicated, highly trained staff member who will provide comprehensive information and resources about pancreatic cancer, treatment options, clinical trials, diet and nutrition, etc., throughout the course of treatment – free of charge. Reliable educational and resource materials from our extensive library are also available at no charge. As of 2014, more than 80,000 individuals have received current and reliable information through PALS.
We support volunteers across the country who help raise the national visibility of pancreatic cancer through local events, attendance at health fairs, distribution of patient information to hospitals and doctors’ offices, contacting the media and educating elected officials about the need for increased federal research funding.
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