By Julie Fleshman – Cancer. It’s a word that makes you go numb. In 1999, my father was diagnosed with cancer — pancreatic cancer. The news was debilitating. Pancreatic cancer is one of the deadliest diseases, with a survival rate, at the time, in the single digits. But I didn’t know any of this yet — I just knew that the news wasn’t good. And then, just four months later, my father passed away, and my world came crashing down. I looked for answers – how do you get pancreatic cancer? Why is there no early detection screening like with other types of cancer? Why is it so deadly?
I called Johns Hopkins University, which, at the time, was one of the few institutions with a pancreatic cancer research program. I left a message, hoping someone would call me back. Surprisingly, I received a phone call from Dr. Charlie Yeo, a pancreatic cancer surgeon. Dr. Yeo encouraged me to call Pam Acosta Marquardt who had also recently lost a parent to this devastating disease and was in the process of founding an organization called the Pancreatic Cancer Action Network (PanCAN).
Pam and I spoke and she told me about an upcoming gala that would raise money for pancreatic cancer research. Instantly, I knew I needed to get involved. I volunteered by asking my dad’s company to sponsor a table, and that’s how I first got involved with PanCAN.
After the fundraising event, I volunteered to host a PanCAN table at an American Association for Cancer Research (AACR) conference where I was responsible for speaking with attendees who stopped by the booth. I quickly noticed that there was no brochure highlighting the organization – only a few one-pagers with information about the disease. I suggested we create a brochure highlighting all the important work that PanCAN was offering. I loved the idea of creating something the organization didn’t have the resources to create. It was my two world’s colliding; the business and entrepreneurial side meeting my new passion to be an activist.
Within a few months of my first volunteer experience, I was asked to join the organization as its first full-time paid staff member. From there, I became the executive director and eventually, president and CEO. I feel that my perspective – as a caregiver, volunteer and employee – have given me a different insight into the work that goes into bringing the organization’s mission to life. Over the past 21 years, I have seen, firsthand, the incredible impact that volunteers and people that have been impacted by this disease have on our cause.
I have committed to always put patients first and create programs and services that accelerate progress and change patient outcomes. PanCAN has made a significant investment in research, $126 million to date, leading large-scale, groundbreaking initiatives that will be the catalyst for transforming the way pancreatic cancer is detected and treated. With such a dismal survival rate, it’s important that we take a comprehensive approach that includes not only advancing research, but building community, sharing knowledge and advocating for patients.
Since I started at PanCAN, I’m so proud to say that we have grown from a staff of one with revenues of $228,000 to a staff of more than 150 and a budget of more than $40 million. More importantly, the survival rate is now at double digits at 10%! But my work is far from done– I’ve set some ambitious goals, most importantly, doubling survival to 20% by 2030. And with so many recent initiatives we’ve launched—from our Precision Promise clinical trial which aims to accelerate new and better treatment options to patients —to our Early Detection Initiative which aims to create an early detection screening approach for pancreatic cancer –I know we can get there! Dad would be so proud of all that has been accomplished. I truly believe he’s rooting for me to continue to lead this fight.
If you or someone you know has been diagnosed with pancreatic cancer, contact PanCAN’s patient services program available to anyone free of charge. If you would like to get involved, you can also volunteer —go to pancan.org and join one our virtual PurpleStride events! Donations also help fuel the PanCAN mission. Registration has officially opened for the Pancreatic Cancer Action Network’s Action Week Voices in Action event, the largest gathering of advocates from across the country who use their voices to call on Congress to fund pancreatic research.