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" yea…

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. 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 one person really make a difference? I've embraced my role as a research…

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 l…

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 how f…

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 Resear…

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 and 1…

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 attention when I r…

FRAXA Biotech Games™. It Could Only Happen In Boston

Three years ago, I had this crazy idea that I would organize an event in Boston that would bring together the Boston biotech community to network in a friendly setting, form new relationships and potential collaborations, while raising money for research in Boston area labs. I found several people who shared my vision and together we launched FRAXA Biotech Games™. The theme is “we’re all in this together," and the beneficiary is FRAXA Research Foundation, which funds Fragile X research around the world. This event supports research in Boston Bear Lab at Picower Institute at MIT, and the Jeannie Lee Lab at Harvard/MGH. FRAXA's mission is to find effective treatments and ultimately a cure for Fragile X, the most common inherited cause of autism and learning disabilities. FRAXA collaborates with these Boston research institutions and also biotech companies such as Ovid Therapeutics.

On September 12, 2019 over 300 people from the biotech community gathered at Cambridge Crossing f…

It's Not (Just) About The Money: It's About The People

As I reflect on my work with pharmaceutical and biotech companies over the past twenty years, I realize I have seen a lot. My experience spans many aspects of the industry and I've met hundreds of people along the way. The people I've worked with include product (brand) marketing, public relations, market research (competitive analysis), medical education, reimbursement, patient advocacy, and research and development. I also worked with a lot of people in the nonprofit patient advocacy sector who relied on the pharma industry for funding for important education programs. And when I sent to work for one of these nonprofit cancer research organizations, I had the opportunity to meet many academic researchers who had collaborative relationships with industry. All of this led me to become an evangelist for medical research and work in the nonprofit sector and work with scientists in academic labs. So I have a good understanding of the people in the ecosystem of drug development. I…