When my husband Rand died four years ago from pancreatic cancer, I never envisioned being involved in the fight against this unforgiving disease that took him from me just four months after diagnosis at the young age of 50. I was angry at cancer and angry at the world for taking such an amazing man not just from my life, but also the hundreds of people who loved and thrived on Rand Skolnick's generous heart. I felt cheated and betrayed and incredibly alone and wanted nothing more than to get as far away from the world of cancer as possible. This, however, was apparently not in my life plan.
As I began to shape the mission of The Palette Fund, the foundation I created to honor Rand's philanthropic legacy in 2009, an unexpected gift arrived in the form of a Facebook message from the founder of a group I had never heard of. "I am so sorry for your loss Terrence, and I hope you know that you are not alone. I started the Pancreatic Cancer Action Network after losing my mother to this disease. I would love to meet you on my next trip to New York." The message was from a woman named Pam Acosta Marquardt. How she found me, I'm still not quite sure, but I am grateful she did as with that message, an important part of my healing process began and instead or running away from cancer, I started facing it head-on.
Over the next two years I not only got to know Pam, but an organization that is dedicated to its goal of doubling the survival rate of pancreatic cancer, still a staggering 6 percent, by the year 2020. The Pancreatic Cancer Action Network was awarded the Palette Fund's first large multi-year grant back in 2010 with $518,000 for its Patient Navigation Outreach Program, as part of its Patient Advocacy and Liaison services (PALS). Today, when the many people who reach out to me with a loved one recently diagnosed with the disease, PALS is the first place I send them as I know both the patient and their loved ones will be in good hands for however long they need the support, guidance and valuable information on everything from nutrition to the most extensive database of clinical trials available today.
This January, I was elected to the national Board of Directors for the Pancreatic Cancer Action Network and I just spent my first board meeting at the annual Volunteers Leadership Training Conference in Chicago. More than 300 volunteers from across the country gathered to stay up to date on the disease and gain traction for their at-home efforts fighting pancreatic cancer.
I know first hand the impact of turning pain into passion and as I spoke to this inspiring group of volunteers, I realized the incredible power of those sitting before me. Like me, the majority of the volunteers attending the conference had lost a loved one to pancreatic cancer. Like me, they too were angry and alone after their loss. And like me, they found family, love and hope in the Pancreatic Cancer Action Network. This hope fuels their passion against this fight and this passion is what will get us to our goal of doubling the survival rate by 2020.
Unlike me, however, they all did not have the luxury of being able to make this fight a full-time job and as I heard the accomplishments of the people in that room on top of what they were doing for a job and for their families, I was at a loss for words. I have never witnessed such devotion and passion to anything in my life. It was emotionally exhausting and completely exhilarating at the same time.
After speaking about my experience and the journey that led me to creating the Palette Fund and working with the Pancreatic Cancer Action Network, I was approached by many volunteers thanking me for my honest words and expressing how touched they were by my story. They were touched not only by the generosity of the Palette Fund in helping them fight this disease, but by the immediate connection and familiarity they felt for my loss and how their loss had also transformed into passion.
Saturday night was a celebratory evening as volunteers and affiliates throughout the United States were honored with Leadership Awards. It was the "The Oscars of The Pancreatic Cancer Action Network" put by our amazing CEO, Julie Fleshman and I can imagine that the energy in the room was fairly similar, perhaps just a lot more purple in the audience.
As the recipients were announced, cheers and applause erupted throughout the ballroom. The final award of the evening, named after the late author Randy Pausch, went to Roberta Luna. As everyone stood in appreciation for all the amazing work she has done as a volunteer fighting this disease, Julie announced that she had lost three family members to pancreatic cancer (her father, uncle and grandmother) and was currently taking care of her mother who was also recently diagnosed. Roberta was a 10-year survivor herself. Her tears and the many tears in the audience were not just tears of pain, loss and suffering, they were more powerful than that. They were tears of hope, passion and encouragement. We are all in this fight together, and we are going to win.
As I left the hotel early on Sunday morning for the airport, I walked by the private dining room where Roberta Luna and about 20 others were attending the Survivors Breakfast. As I passed by the closed doors, the room erupted with laughter and I could feel the energy all the way out in the hall. I couldn't stop smiling.
The Pancreatic Cancer Action Network will convene again in Washington, DC this June for its annual Advocacy Days as we take over the halls of Congress and fight in support of The Pancreatic Cancer Research and Education Act. To date, this bill has more co-sponsors than any other bill on the Hill with large bipartisan support. If this were any other year The Pancreatic Cancer Research and Education Act would pass with flying colors.
I have no doubt, however, that we are at the tipping point for pancreatic cancer and we are going to win this battle. The time is now for changing the course of pancreatic cancer and our passion is going to drive this fight and make it happen. Congress must listen and take action. There are too many lives at stakes. There are too many hearts at stake. Passion will prevail.