It’s hard to believe this year marks the 15th annual Appendix Cancer/PMP Awareness Walk and Run. This event began on Father’s Day 2007, less than one year after the death of Frank “Dutch” Culbertson on July 22, 2006.
As Father’s Day 2007 approached, Dutch’s wife Judy sought a positive way to commemorate the day with her children. She and Dutch’s lifelong best friend, Jim Carroll, gathered a group of Dutch’s friends and family at Ridley Creek State Park near Philadelphia to remember Dutch. Little did they know that in the process, a tradition began that would have a profound effect on the appendix cancer and pseudomyxoma peritonei (PMP) community.
Judy and Jim realized after the first “Dutch Walk” that they could make a real difference for other appendix cancer and PMP patients. Following another successful Dutch Walk in 2008, Jim and Judy connected with Lisa Luciano and her brand-new research foundation supporting appendix cancer and PMP research and education, the ACPMP Research Foundation, and joined the Board of Directors.
Over the next several years, Judy and Jim built their gathering of Dutch’s family and friends into a core fundraising event that most years represented the largest single source of annual income for the ACPMP Research Foundation, regularly raising $40,000-50,000 per year.
Judy and Jim have said that they had a few goals in mind when they embarked on their appendix cancer/PMP fundraising journey. One was to educate patients about these rare diseases and where to find optimal care to reduce the number of patients undergoing futile and sometimes counterproductive treatments. Another was to educate physicians to encourage proper referral to specialized centers with expert training in how to care for these complex cases.
Judy and Jim made significant progress in this area by organizing a medical symposium focused solely on appendix cancer and PMP in Philadelphia in 2009. Following the success of another Philadelphia symposium in 2010, a series of educational appendix cancer/PMP symposiums sponsored by ACPMP around the United States followed over the next decade culminating in ACPMP’s first multi-institutional virtual event attended by over 400 participants in 2020.
Another area Judy and Jim sought to improve was appendix cancer and PMP research. Prior to 2008, there was no centralized organization raising funds and distributing grants for research on these diseases in an objective way. There was also little to no government research funding. The funds raised through the first two Dutch Walks were instrumental in ACPMP issuing its first research grants for $100,0000 in 2009, and ACPMP has issued research grants annually every year since totaling over $1.3 million. The annual Dutch Walk has continued to be a key source of funds for that research grant initiative.
These research grants have had a tremendous impact, culminating in 20 peer-reviewed scientific research articles, a phase one clinical trial directly arising from a 2016 grant for the first novel treatment to be developed specifically for PMP in decades, and foundational genetic research funded by ACPMP in 2011 and 2012 that led to a series of research studies proving for the first time that appendix cancer is genetically distinct from colorectal cancer. Another study funded in 2018 led to a recently announced $2.5 million grant from the National Cancer Institute to support research efforts at Wake Forest Organoid Research Center (WFORCE), of which ACPMP is now a funding partner, to develop a new drug testing platform to predict treatment outcomes for appendix cancer/PMP patients.
Finally, Judy and Jim made it a mission to support a program for cytoreductive surgery and hyperthermic intraperitoneal chemotherapy (CRS/HIPEC), the standard of care for metastatic mucinous appendix cancer and PMP in the Philadelphia area so local patients would not have to travel far for treatment, an experience they lived through with Dutch. This goal was realized through their partnership with Dr. Bo Bowne of Jefferson Health, the first physician in the Philadelphia area to develop a practice dedicated to CRS/HIPEC. This partnership has led to increased awareness of Dr. Bowne’s program among Philadelphia area appendix cancer/PMP patients, realizing Judy and Jim’s goal of enabling patients to be treated locally by a specialized team.
For many years, the annual Dutch Walk site linked to the “Starfish Story.” In this story, a child is walking on a beach where thousands of starfish have washed ashore. As the child throws starfish back into the ocean one by one, a man approaches and asks why the child is throwing the starfish back. “There are thousands of starfish here, you can’t possibly make a difference!” he says. The child picks one up, throws it into the ocean, and replies, “well I made a difference for that one!”
Likewise, Judy and Jim’s efforts through the Dutch Walk and their work with the ACPMP Research Foundation have had a lasting impact on so many in the appendix cancer and PMP community. Judy and Jim, we at ACPMP are so grateful to you both for your work over the past 15 years. The transition of the Dutch Walk to an annual virtual event will enable the legacy of “Making a Difference for Dutch” to endure for years to come. Thank you for all you do for ACPMP and the appendix cancer/PMP community!