A Laypersons experience at the 2017 Melanoma Research Alliance Scientific Retreat

Melanoma Research Alliance Scientific Retreat

February 13th-15th, 2017 Washington DC

A Laypersons Experience

I might be a layperson, in that I do not have any formal training in the medical profession, but I have spent a lot of time over the years living with and studying melanoma. My wife was diagnosed in 2004 and, after multiple surgeries, treatments, and time in a clinical study, passed away in 2008. In 2014 I was diagnosed with melanoma but had the benefit of past experience to catch it early. Also, I have never travelled very far from home so my flight across the country was a new experience and left me with a sense of awe. It amazes me how we can travel the entire width of our country in half a day. I had a stopover in Minneapolis. As we took off and began the last leg of the flight I had a view of our country I’d never had before. I had pictured everything looking like Oregon, not realizing how flat most of our country is. This emphasized to me how important a person’s experiences and perspective really are.

I arrived in Washington around 5pm eastern time and checked in at my hotel. My first meeting was an informal dinner at 6:30 with the organizers of MAC (Melanoma Action Coalition). Neil Speigler and I shared an all too common story of losing a spouse of decades after a diagnosis, of what I thought at the time as a harmless skin cancer, melanoma. During dinner we shared out stories, our passions, and our goals. MAC was brought together to help all these nonprofits to support each other with our strategies for fundraising and awareness. They are a new organization and will be growing over the years. In the first year they have more than tripled its membership.

The next day I was up at 6:30 for breakfast and to review the information packet given to me. My first official meeting was scheduled for 10am with MAC. This began with introductions. Through the next few hours information was presented on education, awareness, and prevention, along with how each group ran their own projects. Information about their projects was distributed so we could all learn and use what has been working for others. We ran long on time and adjourned before finishing to attend the MRA forum. We continued our discussions the next day in an informal meeting in the hotel lounge.

The Monday afternoon forum presented by the MRA started at 1 and ran until 5:30. We quickly introduced ourselves and any organization we were associated with. Speakers covered information about projects that are presently moving forward. Work by nursing to add training for nurses to be able to identify suspicious spots when a patient is being admitted to a hospital and examined for bedsores. Dr. Weinstock presented his online class for Primary Care Providers to help improve their ability to confidently and efficiently refer a patient to a dermatologist. Then Dr. Luke spoke on clinical trials and followed with a primer on the science of the retreat we were attending.

            That evening an informal reception dinner was held at the hotel. This was a menu of dim sum and was set up with small tables which leant itself well to the goal of getting everyone to mingle. I had the opportunity to meet with many people with many different backgrounds. There were a couple in particular.  Jim Baker of Idera Pharmaceuticals gave me real insight into the structure and goals of the company he is with, and a little on what was on the horizon. Another was Assistant Professor Alexander Boiko of the University of California, a very amiable person who asked me to introduce him to meet Dr. Leachman. Visiting on this informal level really gives a person a perspective of researchers you will never get from just reading reports and attending lectures. That night I made it to my room and spent a few hours reading through the materials for the next day and typing up notes from my first day. 

            Tuesday started early as well. Breakfast started at 7 and we were able to meet back up with the friends we had made the night before. The retreat began with opening remarks by Michael Kaplan (MRA President and CEO), Louise Perkins (MRA Science Officer) followed with an introduction by Ross King and welcome video from President Jimmy Carter. I can tell you Mr. Kaplan was the most accessible person you would ever meet. He was always ready to greet you with a smile and make a person welcome. Again, I received a good lesson in perspective.

            After the morning lectures there was a fireside chat during lunch with a conversation on cancer causation and cures. This offered a question and answer session with Siddartha Mukherjee from Columbia University and author of “Cancer: The Emperor of Maladies”. Antoni Ribas of UCLA. And Steven Rosenberg of the U.S. national Cancer Institute.  This was very enlightening and a few good questions opened many doors for conversations.

            Tuesday evening was a dinner at Teddy & The Bully Bar. This was a wonderful Theodore Roosevelt themed restaurant a few blocks from the retreat. I will say the reception was a bit crowded but I again met some wonderful and diverse people. This was a sit down affair with multiple courses served and plenty of time to interact during the meal. Across the table from me was a group from Israel from both Tel Aviv and Hebrew Universities. This was rounded off with conversations with doctors from Munich and Zurich as well. So many around the world working on similar goals gives a person a lot of confidence that successes in research will only continue. After dinner the cool walk back to the hotel was a welcomed relief and sleep came quickly that night.

            The next morning was the final breakfast and I had time for just a couple of the speakers before needing to catch my flight home. During breakfast I met with another doctor from Israel. This was educational, but not about melanoma research, but on the difference in patient care. This doctor is a clinical researcher with a number of patients. Contact with their patients is an imperative at their facilities. Each patient has the doctor’s email and cell phone number and has confidence of having support at any time.

After a couple more speakers I went back to my room and packed. A short cab ride to the airport, three attempts to get all the way through the TSA security, and I was waiting for my flight. Packed tight as these flights can be at least this plane had an entertainment system built into the head rest of each of the seats. This did help pass the time on the long flight. I did have a bit of a issue during the changeover in Atlanta. It seemed the flight was overbooked by two seats and since my seat was not pre-assigned I had to board last in the chance there wasn’t room. I was lucky as someone did not show up and I was able to board. We left Atlanta on a sunny afternoon. I had to keep the window shade down most of the flight because of the heat and was only able to peek out on occasion. By the time we crossed the Cascades it was evening and the weather had changed to rain. Passing over Portland and Vancouver at 6pm I was able to see the trail of headlights on the freeway. I found myself thinking of my daughter in that traffic on her way to the airport to pick me up. All these people, including my family, will at some point have cancer touch their lives in some way. If not themselves, a family member or friend will someday be diagnosed with a cancer. I have now seen firsthand what is happening in this area of cancer and am confident the progress in fighting all cancers will never stop. I hope my perspective will increase your hope and can motivate you to help in some way as well.