On the Importance of Getting Patients and Scientists Together

This past weekend in Washington has this guy–yes, ME–speechless.

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It’s not often that I find myself searching for words. Thirty-two years as a communicator and someone whose personality tends toward the highly effusive, I am surprised that I find myself having difficulty putting into words, the transformational experience I just had in Washington D.C. with PCF scientists and a group of patient-survivors. From where I sit, I often have one arm fully extended into the patient-survivor world and the other in the vast and often dense world of scientific research and discovery. In the middle, I try to share information and insights that marry the two.

As part of the Celebration of Science (an event focused on reinvigorating America’s support for scientific research to find cures for patients across many disease states) and PCF’s program within the event, I led a small group of patient-survivors so that they could see first hand the advances that are being made on their behalf. It was also an opportunity to thank our funded researchers and let them hear from those who deeply appreciate their commitment to finding cures. I also had the honor of opening the PCF program Friday with a tribute to our special guests and closing it as we ”passed the torch” to out nearly 100 Young Investigators. In the morning, I reminded our scientists that each man on the stage represented more than a million men and families around the world who are touched by prostate cancer–that they are our raison d’etre–our sole reason for being. In closing, I ended by saying those in the brotherhood can supply each other with encouragement for peace and strength, but that we need to look to our scientists to keep the wish of life alive for so many.

Through all of this, our small group of  guests had the opportunity to share their experiences, frustrations, fears and hopes that they have encountered during their journey with cancer. We were also joined by our dear friends, the Vinecki Family and that wonderfully impressive 13-year old, Winter Vinecki, who  helped me with our meeting and addressed the audience at the Kennedy Center Gala Saturday evening.

This all said, I am still having difficulty trying to encapsulate the experience. Thus, I will rely on some of my friends to paint the picture. Jim Highly, also known as the Bobblehead Dad, was diagnosed as a single dad at 44 years old (and some still insist on calling this an old man’s disease…). This morning Jim wrote a perspective on his weekend experience: Making Whoopi. And Why Bioscience Matters for Our Kids.

“We will talk about this week-end for years to come… because it will impact the world and its status quo!” –Rick D.

“I walked away with comfort, peace, hope but most importantly a warm and caring group of brothers that I look forward to meeting with again and again. Words cannot explain how blessed I am.” –Bill M. No. 1.

“It was very helpful to me. And, to all my other Brothers… it was a pleasure meeting all of you. I truly enjoyed our time together. It was a meaningful, helpful and fun experience for me.” –Bill M. No. 2

“Prostate cancer is a journey so many men walk alone. This weekend was an incredible reminder of the strength, power and potential us guys have when speak loudly, ask for support, hug it out, and walk the walk together.” –Jim H.

“It will be difficult to top the ‘mountaintop experience’ of the past few days. And the pinnacle of this time together was the privilege of getting to know–and bond–with each of you.” –Craig P.

“I was very pleased to have been able to contribute and grateful for the chance to give something back for all the blessings I have been given. Looking into the eyes of those men drives me to do much much more…”  — Andrew C. von Eschenbach, MD, former Director of the NCI and former Commissioner fo the FDA

“The weekend surprised my soul. Plus, I understood a lot of the science! The bond that I already feel toward everyone in the group has sent this often cynical guy into an orbit of optimism. I have a new problem: I am drowning in dopamine. Good experiences, laughter, knowledge, and, obviously, chicken come with a healing capacity that pills and drips can only dream they possess.” –Tom P.

Of course, I would have loved to have 200 hundred patient-surviors at this event, but that would have been impossible. However, we were able to film a good deal of the proceedings and will be producing a patient-focused documentary that I will post later this fall. I am deeply grateful to our guests who so willingly allowed themselves to be filmed and who shared their personal and heartfelt experiences to help other patients and families. I am also grateful to my friend and cancer mentor, Trip Casscells, who opened his home to us on Saturday for our Men’s Retreat.

The Brotherhood remains strong. Our scientists remain committed to our cause. Together we will find cures.