The Power of Community: The White Ribbon Project

The Greek meaning of evangelist is "bringing the good news." It's why I call my podcast the Research Evangelist Podcast. I love to share stories about people in life sciences who are doing amazing work to advance cancer research. And it's why The White Ribbon Project has captured my attention. The White Ribbon Project is a grassroots movement of lung cancer patients, advocates, clinicians, researchers friends and families with a mission to change the public perception of lung cancer by spreading awareness that anyone with lungs can get lung cancer. No one deserves lung cancer whether you smoked or not. But lung cancer is not just a smokers disease, as more and more people are getting lung cancer with no smoking history. The White Ribbon Project is proving that the power of a community that cares can be unleashed by individuals who wanted to make a difference - people that didn't set out to start a movement. It's because their story is so sincere and authentic

Online Cancer Communities and Serendipity

I've often told friends that I believe in serendipity. One definition of serendipity is "the occurrence and development of events by chance in a happy or beneficial way." Or even better maybe, "an aptitude for making desirable discoveries by accident." It's like saying "it's a small world." That happens to me a lot, but the world is not small unless you make the effort to actively connect with people and engage in real human conversations. And if you use the online tools available in the way they were meant to work, like Twitter, you can make real human connections by sharing what you care about with the world. Online communities provide opportunities to build authentic connections that can blossom into offline friendships, business relationships and networking. In the online cancer communities, really positive and interesting things happen to me often. I recently made an amazing new connection that came about because of some old connections an

The Upside-Down Cake

  The COVID-19 pandemic has forced me to think a lot about my work and in particular one of the events that I co-founded, FRAXA Biotech Games . Pre-pandemic and in years past, the event was a fun gathering of scientists in the biotech community in Cambridge to network, make some new friends and compete in lawn games. Then COVID made it impossible to get a large number of people together (we were expecting 500+ people). So we changed the event to a virtual gathering. And it changed the way that I thought about this became even more about shining a light on the people in the life sciences community and their commitment to finding answers to tough medical problems, including COVID-19. The event was awesome, but I kept wanting to thank the people who showed up. My friend Keith Spiro started using the phrase "the upside-down cake" not the one with pineapple, but literally a cake turned upside down, with frosting on the bottom. Let me explain. In "normal"

If It's Not Pink, Will Anyone Notice?

Every year in New England when the calendar turns to September we feel the change in the weather start to feel like fall. I start to think about the rest of year and what I can do to make a difference. November is Lung Cancer Awareness Month (LCAM) and it's just around the corner. And it comes on the heals of the annual pink washing that will take place in October for Breast Cancer Awareness. I always thought I did my part as a lung cancer survivor and advocate to "raise awareness" during November. But have I made a difference? On self reflection I don't think that I have done as much as I could, so I am going to change that.  Me with former Congressman Rick Nolan, a champion for lung cancer research In past years I have shared my lung cancer story and attended rallies with other advocates to bring attention to lung cancer research and express what it means to me. I've always been happy to do so. But this year I am in a different mindset and want to do more. Can

Now More Than Ever

I keep going back to that phrase. Now more than ever. As a research evangelist, patient advocate and lung cancer survivor, these things define who I am and shape everything I do and every project I am involved with to bring impact on the world. As a champion for research, I want to share positive stories about the people in research labs and life science companies who do brilliant things. Though I am but one voice, my voice comes from a perspective of a patient who survived cancer living a life full of gratitude and building trust. I believe now, more than ever, the world needs to appreciate the work of the life science industry and the people who work there. This community, and biopharma companies in particular, often gets criticized for high drug prices and being greedy, but doesn't get the credit it deserves for all the good it does. Now more than ever the people who work in this community deserve to be praised for the good things they do. Many people and organizations in the li

Building Communities of Cheerleaders, Ambassadors and Advocates

Ever since my lung cancer experience, I've been on a journey to try to be more grateful. To me living a life of gratitude means appreciating everything more and expressing that to people that I care about. I'm far from perfect at doing this, but I try my best to express my gratitude to others, to let them know that when they do things to help me, it means a lot to me. This gratitude journey started with my wife Missi and our three boys after my lobectomy and follow up treatment. It also has led me to find interesting people in my work life. People that go out of their way to volunteer to help me even when they are super busy with things in their own lives. People like Keith Spiro . I've never met anyone quite like him. What is amazing about him is that he's one of those guys that has so much going on behind the scenes you don't even realize how talented he is until he literally just shows you. He's the one who named me the Research Evangelist. And he's the o

In Your Face! ...It's Not Just Pie In The Sky

When speaking with people about cancer research over the years I often heard that a cure, or even advanced targeted treatments (especially for lung cancer) are just "pie in the sky" thinking. Of course, in my response now, I point to precision medicine approaches to treatment now available due to advances in genomic understanding about specific mutations in cancer. I heard the exact same thing a couple years ago when speaking with a parent of a child with Fragile X syndrome who asked me if using CRISPR to treat Fragile X was just "pie in the sky" - as in, is there a chance it could work, or is it just impossible? As an optimistic person, my answer was that given how rapidly technologies such as gene therapy and next generation sequencing are evolving, many things that seemed impossible are definitely not pie in the sky, even for complex disorders like Fragile X or diseases such as lung cancer. The context of that conversation was an article she had read about h

Do We Really Need Another TV App?

I read an article today in Vulture , the culture and entertainment site from New York Magazine about how Quibi , the long-hyped, mobile-centric streaming platform devoted to short-form programming had raised $1.75 billion. Quibi, the brainchild of Jeffrey Katzenberg, the former Disney studio head and DreamWorks co-founder, had promised to reinvent television by streaming high-quality content in ten-minute-or-less chunks to “the TV in your pocket.” Given that  Quibi reportedly lost 90 percent of early users after their free trials expired, it seems like another example of a ton of money invested in an app that maybe people don't need. Which got me thinking about what a difference $1.75 billion would have made if invested in medical research. In particular, the impact almost 2 billion dollars would have on the research labs that are searching for treatments for patients with unmet medical needs. To give you an idea of what a billion dollars in research looks like, Mass General

Be Kind to Cancer Patients

If someone who works for you (or with you) is diagnosed with cancer, please be considerate of the emotions he or she is going through. I was just thinking back to when I was diagnosed with lung cancer and what it was like to go to work. It was not like anything I ever experienced emotionally. A cancer diagnosis will consume every waking moment. I've heard people say that they throw themselves into their work to keep their mind off of what is happening in their personal life. That sounds great but it's not reality for many people like me. I remember the call from my doctor when he told me I have a tumor in my lung and that I needed to come see him. I also remember going to work the next day (and several days and weeks after) and how hard it was for me to concentrate on my job responsibilities. When you are told that you have cancer, your life is turned upside down and nothing else seems to matter but your life, and your family. In my case a wife and 3 young boys ages 5, 3 a

Betting On Great Researchers

Have you ever met someone that just gives you a sense of confidence that anything is possible? I've met many researchers over the years and some of them just fill me with such hope that I feel that given the funding necessary to advance their ideas, a breakthrough would happen. I don't say this naively to suggest that it's just about money. Because I know that money doesn't solve all problems and in research there is no sure bet. But in medical research, often times good ideas stay in the minds of scientists due to lack of sufficient resources to do the experiments that could make huge advancements in understanding disease. And with some researchers you can just tell that they have ideas in their head that given the sufficient support there would be huge return. Researchers like Dr. Rudolf Jaenisch. I have recently come to know Rudolf Jaenisch , a Founding Member of Whitehead Institute at MIT and  National Medal of Science recipient. His lab caught my atten