Rare Leader: John Hopper, President, Fibrolamellar Cancer Foundation

The Basics
Name: John Hopper

Title: President

Organization: Fibrolamellar Cancer Foundation

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Disease focus:  Fibrolamellar carcinoma is a rare liver cancer that usually occurs in adolescents and young adults who have no history of liver disease. Patients typically present with symptoms that may include abdominal, shoulder or back pain, loss of appetite, weight loss, jaundice, and occasionally a palpable mass. The typical treatment is surgical removal of the tumor. When the tumor cannot be removed surgically or when there is distant spread, other therapies may be used to slow down the spread of the disease. There is no standard regimen and non-surgical therapy varies from patient to patient. These therapies are not typically curative but may shrink tumors for a period of time.

Headquarters: Greenwich, Connecticut

How did you become involved in rare disease: I originally became involved in rare diseases when my nephew at the age of two, developed stage four medulloblastoma. I couldn’t pronounce it and did not know anything about it. I then found out that it was a rare pediatric brain cancer and that every pediatric cancer is classified as rare. I started to get involved a little in that area and then years later met a family in Greenwich, Connecticut, who had lost a son to a cancer called fibrolamellar, which again I hadn’t heard of nor could pronounce. I heard their story about his struggle in his mid-twenties. It was an 18-month journey for this young man, Tucker Davis. There was little hope in the sense that there were no curative therapies and no community around this rare disease. He fought hard for 18 months and had the vision to start the Fibrolamellar Cancer Foundation. That story from his family, who helped to continue the foundation, touched my heart. I realized that this is an area in which I could make a difference. Between my executive career in marketing and healthcare, my own personal experience with medulloblastoma, and hearing about Tucker Davis’ journey with fibrolamellar—it all made me think that this was a place I could contribute.

Previous career: Executive in marketing and healthcare

Education: B.A. in psychology and economics, College of the Holy Cross; Executive MBA, Oxford University

The Organization
Organization’s mandate: It’s to encourage collaboration. Our belief is that in a rare disease, and especially in a rare cancer, you’re not going to be successful by doing things alone. You need to build a team that’s willing to talk to each other, to share information, to share data, and to work together. Our big buzzword is “collaboration” and that’s a mandate with every research grant that we make and every meeting that we hold. It goes across both the scientific community, as well as the patient community.

Organization’s strategy: Our strategy is to be what I call “the mouse that roared.” That means we know we’re small, but we know we have to be loud. That means being in front of all the key stakeholders we think can help cure this cancer and have a loud voice in it. We understand the phone doesn’t ring in for rare diseases. But instead you must be outbound focused. Most people don’t know about rare diseases. Unfortunately, a lot of people don’t care about them. Our strategy is to be that loud voice—that leader— to make sure that every stakeholder from government to academia to pharmaceutical pays attention to this cancer and understands that working on this small cancer may lead to bigger things too for the rest of them.

Funding strategy: We go beyond traditional fundraising as were lucky enough to have some significant supporters for the organization.  Our Foundation started to look at venture philanthropy as a new area where high net worth individuals touched by cancer  have gotten to the stage in their life where they realize they want to put their money to great use and for a common good. We find that that is an important funding area. We also go after those organizations that are looking to help fund cancer research outside of the NIH. This includes groups like the Department of Defense, which has a significant budget in the area of cancer, and we make sure that our rare cancer is part of that. We look to go beyond local fundraising events to include resources that we think can be significant, and ones we can convince that our cancer is worth their investment.

What’s changing at your organization in the next year: We were fortunate to be a recipient of the Chan Zuckerberg Initiative’s Rare As One Network grant in 2020. It was a significant competition. I think they had more than 300 applications and they narrowed it down to 30 organizations across rare diseases. The mandate for us with Chan Zuckerberg is to create a robust patient research community. Our patient community is under a thousand people. We’re still not exactly sure how many people because it’s that rare. But the idea here is to accelerate the scientific end of our equation, to rally the patients and the caregivers to get behind all of the scientific areas that we need their help with—bio banks, clinical trials, working with the Department of Defense, and tell their story about why fibrolamellar cancer research should be funded. That’s the significant change this coming year.

Management Style
Management philosophy: To build a strong team. I’m the first one to say I can’t do it all alone. We are a small organization. We have three full-time employees and two part-time employees. It’s a fantastic team. I say everybody’s voice counts. Everyone’s idea counts. I don’t care how crazy it might be. Be innovative, support each other, be constructive, and together we’ll be able to forge ahead.

Guiding principles for running an effective organization: I’m a big believer in strong communication. My mantra is “No surprises.” If something isn’t going right, I want to know about it. I don’t care if you’re saying the sky is falling or whatever else. We’re here to help each other. And if people know that you are open for the good news and the bad news, I have found that it creates a strong team. It creates trust, and it helps to move an organization together as an organization, versus individuals alone.

Best way to keep your organization relevant: Part of it is to take leadership roles so we’re not just a small voice among many, especially when it comes to rare diseases and rare cancers as there are so many of us. What do I mean by that? Fibrolamellar cancer is now on the map. Many people can pronounce it. We have more than 18 institutions that are researching it where we had about four or five six years ago. We have the Department of Defense, the NCI and groups like that working closely with us. We have allowed leaders, such as me, to help to co-chair groups like the GI Cancer Alliance, which represents all the GI cancers. There are 42 foundations now in the GI Cancer Alliance after just four years.  I became one of the founding co-chairmen of that organization along with my co-chair who runs a much larger cancer area, which is colon cancer. I brought in the aspect that the much less predominant and rare cancers in the GI cancer area needed to have a voice. The other way that we keep our organization relevant is we took a founding leadership role in terms of co-chairing the NORD—National Organization of Rare Disorders—rare cancer coalition. Again, that’s broader than just fibrolamellar cancer. We are able to guide much of what that organization focuses on, benefiting our patients and researchers, and keeping fibrolamellar as relevant as possible.

Why people like working with you: I leave my ego at the door. I’m sure we all have an ego to some degree, but I try to come into my office situation and my team situation and say, “We’re all equals. We all have great ideas. We’re all smart thinking people.” I encourage people to take risks, to be innovative, and to also take constructive criticism. I lay my cards on the table, what you see is what you get. I think people have appreciated that. And like most people, I like to have fun too by making sure that we do things together for team building and that, even outside of the office, we are relevant to each other in terms of recognizing small events and big events in people’s lives. It’s not just a workplace for me in many cases. It’s a family.

Mentor: My dad, Paul, was my mentor. He was a self-made man. He went through World War II at the age of 19 and was in the battle of Midway as a lieutenant at that age. He then earned his Ph.D. from Notre Dame in organic chemistry. He was asked to be the head of the FDA during the Carter administration, but he didn’t take it because he couldn’t afford to it with four kids in college. I looked at his work ethic. I looked at his ability to lead, to be respected, and to keep a high moral and ethical standard, which taught a lot to the rest of the family. While I have had many great people who I’ve worked with in my career and studied under and learned under, it really goes back to my dad, who really instilled in me a sense of ethics, a thirst for learning, and an ability to treat people the right way . He made me realize that you can be successful in your personal life and your business life with those mantras.

On the Job
What inspires you: To see real progress that has the potential to save lives. When you’re dealing with a rare disease, and especially a rare cancer like fibrolamellar cancer, there are no curative therapies. There’s no standard of care, and diseases like this have a very low survival rate. When I see progress in our research, when I see pharmaceutical companies also take an interest in this rare cancer, or see more clinical trials coming up, giving  hope for these 12- to 34-year-olds battling this cancer—that inspires me. 

What makes you hopeful: We’re just getting more and more top-level researchers and stakeholders involved in our disease. We now have more than 18 research institutions, such as Harvard, the Mayo Clinic, M.D. Anderson, UCLA, and Johns Hopkins—you name it. It includes government agencies. FCF is part of the National Cancer Institute’s My pediatric rare tumor (My PART) program. We’ve been a leading voice in the Department of Defense’s CDMRP 9 (Congressionally Directed Medical Research Programs) initiative, which has millions of dollars in grants for cancer research. We have broadened who is interested in fibrolamellar, who’s able to fund us, who advocates for us. And that makes me hopeful that with all of these smart driven people behind us, we will find a cure, and sooner than later.

Best organization decision: One of them is diving in and applying for the Chan Zuckerberg Initiative (CZI) award. When we heard about it, we thought, “What are our chances because there’s going to be hundreds of organizations going after that?” But we won, and we have gotten so much great support from the Chan Zuckerberg initiative. This relationship is new to us, and it’s really helped evolve where we can go. Not only is CZI financially supportive of the foundation, but the resources that they have available are just incredible. To have fibrolamellar cancer on the radar screen of Mark Zuckerberg and Priscilla Chan to us is exciting.

The other decision early on was for our Foundation to broaden our pool of researchers. We were funding a small group of academic research centers of which one had 90 percent of the research dollars. We realized some refused to share information from research we funded. They would do the research almost in secrecy and wouldn’t publish. When I came in, I said, “That’s not going to cure this cancer. It’s got to be teams. It’s got to be collaboration.”  Our mantra soon became “We’re going to broaden our research networks, there’s a lot of smart people out there, and let the best man win. We’ll support you all.” That was a deciding factor six years ago that accelerated the foundation’s research progress. 

Hardest lesson learned: The hardest lesson learned is that a cure is very hard to find. You go into a new organization thinking we can do this. We’re going to find that cure tomorrow. We get up to bat, get to first base, get to second base and third, and about to slide into home plate and realize, “something’s not working here.” The clinical trial is not yielding the projected results. We can’t build a mouse model as fast as we want to. We can’t generate the cell lines we wanted to. We can’t do a lot of things that we thought we were doing so well. Cancer research is so tricky, which is why research and drug discoveries for every cancer are ongoing. We wish we could be curing these young people sooner than later, but the reality is it’s a longer road than we thought.

Toughest organization decision: The toughest decision we made was to stop funding a major organization that we had a long-standing relationship with because of the lack of collaboration and sharing data. We still would like to continue a relationship with this particular group as it was, but we need to have every grantee on the shared data strategy. And importantly we needed other researchers to benefit from discoveries that could make a difference in the outcome of their projects for fibrolamellar cancer.

Biggest missed opportunity: With the Fibrolamellar Cancer Foundation, I don’t think we have missed any big opportunities. We’ve worked hard to get this cancer front and center with industry, academia, government and other key influencers.  We’re now invited to speak at major conferences on behalf of rare and GI cancers and our opinions are valued. My wish is that we create a broad enough organization to build many more relationships that will help us find that one piece of the puzzle that will save lives.

Like best about the job: Working on behalf of young people who have a challenge in front of them that’s extremely challenging for them and their family. I wake up and say, “Maybe today’s the day, and if nothing else, I know we’re all working towards a goal that really has a meaning and a purpose to it.”

Like least about the job: Watching people lose their fight and wishing you could have done something that would have made a difference.  Talking to a parent who has lost a child, or talking to someone who called you in the weeks before to say, “Isn’t there something you can do? Isn’t there somewhere you can send us? Isn’t there a compassionate care drug that might work, isn’t there something you or the Fibrolamellar Cancer Foundation can do to save my child?” You’d like to say, “I have that magic wand.” I don’t have that.

Pet peeve: People who don’t follow through. I have low tolerance for those who are trying to help, or claim to, and weeks go by, nothing’s happened, and there’s no real reason for that except for the fact that we weren’t a priority and we thought we were.

First choice for a new career: I would love to teach. I had a stint for a while working as an adjunct professor at the NYU Stern School of Business years ago teaching a digital marketing course for the executive MBA group. I loved it. I hope to go back at some point in time, after my job is well done here, and teach for a while.

Personal Taste
Most influential book: The Bible. That’s not me being a holy roller. I read it with a discussion group. It’s amazing how many lessons in life stem out of the best-selling book of all time.

Favorite movie: There’s an old movie out there, which I saw when I was a young parent, called Ruthless People. It’s worth going back and looking at it. I believe it was Bette Midler and Danny DeVito. I just howled through that movie like I never did before. It was silly. It was slapstick. And it just made me on a Friday night say, “You know what? Whatever happened during the week, I am in a zone now where I am just belly laughing and enjoying myself.” So that’s been one of my favorite movies.

Favorite music: As a New Englander, I’m really enjoying how country music has evolved. I might not have said that 15 years ago. I like the fact that there’s so many variations of it, and I like the storytelling that comes out of it.

Favorite food: My father’s family were Vermonters who were not the best cooks. On the other hand, my mother’s side were Italians who did know how to cook. I’ve got fond memories of big family gatherings with all the homemade pastas and the sauces and the meatballs. If you put something Italian in front of me, boy, I become your best friend.

Guilty pleasure: Unfortunately, dark chocolate too late at night. I realize the caffeine will keep me up, but boy does that taste good.

Favorite way to spend free time: We’re lucky enough to have a family farm in Southern Vermont. My dad was a Vermonter growing up and he wanted to make sure that all of his kids growing were not, what you might call, preppy metro New Yorkers. He bought a working farm, and we went up there every summer, helped do chores around the farm that most don’t usually get a chance to do. My children have had a chance to enjoy going up to the farm, which is now just more of a vacation place. It’s remote, nestled near the Appalachian trail. There are beautiful mountains all around. If I can break away and do outdoor activities up there, that’s my favorite way to spend my free time.