College usually consists of picking a major, studying for finals, and hanging out with friends. But not for Duke University student Josh Sommer. Instead, he's leading a foundation and conducting cancer research -- all in a fight for his life.
That's because Josh has chordoma, a rare cancer affecting 300 Americans a year. And rather than wait around for more research, he and his mother have taken matters into their own hands and created the Chordoma Foundation to accelerate the search for a cure.
I can't do Josh's remarkable story justice in a blog post alone, so I'm very glad he's our inaugural Social Citizens podcast and can tell you his journey in his own words. His unique perspective -- as a patient, Millennial, and nonprofit executive director -- is one you probably can't hear anywhere else on the Web, so tune in here to find out how this young leader is making some serious lemonade out of one of life's biggest lemons.
Ed. note: There's a full transcript following this note for those of you who prefer to read the interview. Also, many thanks to Josh for being our first podcast guinea pig! As with everything else on Social Citizens, we'll be constantly refining and improving our approach to audio -- so don't be surprised if the format changes in the future. And if you hit any technical glitches, shoot us an email or comment, and we'll get right on it. Thanks!
Interview transcript:
JULIA ROCCHI: Hi! This is Julia Rocchi with the Case Foundation. Today we’re interviewing Josh Sommer. He’s the executive director of the Chordoma Foundation. You can find him at ChordomaFoundation.org. Josh, thank you so much for speaking with us today. I really appreciate it. I guess I am going to ask a really basic question first. What is chordoma, for people who may not know what it is?
JOSH SOMMER: Absolutely. Chordoma is a type of bone cancer that can occur anywhere along the spine, from the head all the way down to the tail bone. It arises from a tissue called the notochord, which is an embryonic structure that is actually the precursor to the spinal column. As the spinal column is forming, the notochord simultaneously disintegrates, but the process isn't exactly clean, and sometimes you end up with little bits of notochord lodged inside the vertebrae or inside the skull, and we don't know why, but sometimes those bits of notochord end up turning into a malignant tumor called chordoma.
It affects about 300 people a year in the United States. So the instance is about one in a million, about one new case diagnosed each day. It affects people of all ages, from children to the elderly, men, women. So it really doesn't discriminate at all.
It oftentimes comes lumped into the category of brain or CNS tumors because it is so intimately involved in the spinal chord and the brain.
JULIA ROCCHI: So, given the severity, I am assuming treatment options are not likely available for it?
JOSH SOMMER: Yeah. Basically, surgery is the best shot. Oftentimes radiation is used as well, but other than that, there is not really any effective chemotherapy. The average survival is about seven years, and because of where the tumors are located, treatment, especially surgery and radiation, are very, very difficult. Basically, you have to get highly specialized treatment from physicians who are really experienced in treating chordoma. But, you can imagine with 300 cases a year, there aren't a whole lot of people who really specialize in it.
JULIA ROCCHI: Now, the interesting thing is you have a more personal connection to chordoma than just being executive director of the foundation. Can you tell us your personal story?
JOSH SOMMER: Yeah, absolutely. So, right after my freshman year, I was actually diagnosed with the chordoma. I had discovered that I had a tumor in the center of my head. It was just completely shocking. A tumor is the most devastating experience you can imagine. The only other thing I can liken it to is almost like after 9/11, just the feeling of total shock and not knowing what to do next.
But I went into surgery, not knowing what the tumor was, just knowing that I had a mass in the center of my head. If you would draw a line from ear to ear in the back of my nose, right in the very center, in one of the most difficult locations to get to.
Waking up from surgery, I remember my surgeon coming into my hospital room and telling me that it, in fact, turned out to be a chordoma, which is what I was hoping it wouldn't be. He told me that chordomas were malignant and that I was going to have a long road ahead, but he also told me that he thought good things were going to come out of it. So I have kind of taken that to heart and tried to make good things come out of my diagnosis.
I didn't know really anything about chordoma at the time, but after my surgery, as I was recovering, I started reading everything I possibly could. Luckily, my mother is a physician. So she is able to help me make sense of the medical literature.
Being a Duke student was a real advantage because I had access to the journal articles that the library subscribed to, and so I was able to really educate myself and read the entire body of literature almost around chordoma and kind of understand what the state of the science was.
So, as I was educating myself, I came to realize that there weren't many effective treatment options, that there was this average seven-year survival, which my mother and I essentially resolved not to accept and from there just became determined and dedicated to try to find a cure.
JULIA ROCCHI: Which is pretty fascinating. I was reading other articles about you, and it said, oh, you have never taken a biology class in your life, and you were in environmental engineering originally.
JOSH SOMMER: Correct.
JULIA ROCCHI: So that is pretty fascinating to go suddenly to laboratory studies and literature reviews. How was that received by others in the field when you started talking to them? Here you are essentially this kid coming up with this self-education about a really rare form of cancer.
JOSH SOMMER: Absolutely. So, yeah, I would say it was a very slow and -- or it wasn't slow. It didn't happen all at once. It was definitely a big learning curve. We kind of learned about it systematically trying to figure out who were the leaders in the field, both in terms of the science, in terms of the physicians who are treating chordoma, and my mother obviously, systematically contacted each one of them, figured out what they were doing, what they wanted to do, and what the barriers were that were preventing them from doing the science they needed to do.
The treating physicians -- we basically tried to understand what were the limitations that they faced in the clinic in terms of giving patients the optimal care that they needed. So we kind of identified this set of barriers and kind of a loose idea of what needed to be done, and we set out to break down each one of those barriers.
The three main barriers that we identified were, number one, communication and collaboration between researchers and physicians. So you would have researchers, let's say at Duke, not knowing that there were people at Harvard or Stanford who are interested in chordoma. There was no synchronization of research efforts, no sharing of data, no sharing of resources. As a result, there wasn't really a critical mass. There wasn't really a field that the researchers could rely on and get excited about.
The other big obstacle was access to tissue. So those are basically the starting points for cancer research. Without being able to study the biology of the tumor, it is nearly impossible to try to develop treatments. So you want to be able to study fresh frozen tumor, which turns out to be very difficult to collect properly, and you also want to be able to study living models of the disease. So that means cell lines or animal models.
Cell lines are actually tumor cells that are taken out of people that are grown in the laboratory in plastic dishes, and they continue multiplying indefinitely. They are a great model because you can use them to screen drugs and to interrogate different pathways and look at what the effects of different genes, turning different genes on or off, has on the cells. That is a really, really good tool for coming up with treatment.
Then the third obstacle, which is really not unique to chordoma, is funding. Because chordoma affects about 300 people a year in the United States, it really hasn't received adequate funding, but one of the things we are realizing now in the genomic era is that all cancers are rare. It doesn't matter if your tumor is a chordoma or whether it is a type of breast cancer or lung cancer. Cancers is defined on a molecular level, not where it occurs in the body.
You have people that have lung cancer, a particular lung cancer that may affect 300 or 1,000 people a year. So I think increasingly, we are going to be thinking of cancer not as a disease of a particular organ, but as a disease of a particular pathway or a particular gene. In that sense, chordoma is very similar, in fact, we are finding to certain types of breast cancer or leukemia.
So, kind of with this background of knowledge and with these realizations and having kind of done this comprehensive literature review, I actually stumbled on a researcher named Michael Kelley who happened to be the only federally funded chordoma researcher in the country, and he just happened to be right in my backyard at Duke.
When I read this paper, I was just totally floored. He had actually published a couple papers on chordoma. When I actually started seeing his name pop up and I looked where he was, to see that he was at Duke, it was totally shocking and really exciting for me.
So, shortly afterwards, my mother and I contacted him and basically shared what we had learned and asked if there was anything we could do to help. Dr. Kelly, I remember came in on a Sunday, met us in the library at Duke. We talked about three hours and just brainstormed about what he was trying to do, from a big picture, what could be done to find a cure. He kind of echoed what we had found, that we need tissue, we need cell lines, we need a community of researchers, and we need funding. And he added other things. He needed someone to work in his lab. So I said I'd give it a shot.
JULIA ROCCHI: So what were the next steps from there in creating the foundation? Why did you feel the need to create a foundation rather than just continuing to work independently, and why was it the most viable solution of any of the other infrastructure you could have set up?
JOSH SOMMER: Absolutely. That is a fantastic question. We set out not to start a foundation. We tried very hard to find other organizations that chordoma would fit in with, and there was a statistic that came out shortly before or during this time when we were thinking about whether to start a foundation that there was something like one brain tumor organization for every 200 brain tumor patients that were diagnosed each year. There's just a tremendous number of foundations that spring up for all sorts of diseases, and brain cancer is just one example.
So we were trying not to reinvent the wheel. We wanted to really focus on the research. So we tried to partner with other organizations, but really no one kind of considered chordoma within their domain.
So kind of as we continued networking with surgeons and physicians and researchers, we realized that there was a tremendous amount of enthusiasm. People were fascinated by chordoma.
The interesting thing is chordoma tends to be a slow-growing but very aggressive tumor, and as a result, patients often have multiple recurrences, and 5, 10, sometimes even 15 surgeries, over a period of 5 or 10 years. So they have become very, very attached to their surgeons and vice versa, and eventually, it gets to the point where the surgeons just don't have anything else to offer the patients.
So the surgeons actually have funded a lot of chordoma research that has gone on simply because they are fascinated by this disease, and they developed such close relationships with their patients that they want to offer them something else. They just almost feel helpless that at some point surgery just doesn't become an option.
So we kind of identified this really energetic and enthusiastic group of researchers, and we realized that we had an opportunity to bring them together and really kind of lead a streamlined and coordinated approach involving expert scientists, expert physicians, and work together to find a cure.
So, with these ideas in mind, my mother happened to meet Francis Collins who is the director of the Human Genome Research Institute -- or now former director of the Human Genome Research Institute -- and really explained that with this rare disease, that it had fallen through the medical system's cracks. It was really being neglected and interestingly had this curious genetic component to it.
There's a number of families who have familial chordoma. So I think it was a combination of curiosity and compassion that Francis Collins basically said "I would like to help" and really helped to jump-start the field.
In December of 2006, he called together a meeting in his office with some of the top minds from the Human Genome Research Institute and the National Cancer Institute to try to figure out what we could do to jump-start the field.
My mother and I proposed that we have a research workshop in three months, which in retrospect was very naive, and they said, "Okay. Well, it's a good idea, but let's do it in a year." It turns out we pulled it off exactly six months later to the day.
We had 53 researchers from across the globe. We didn't know how this was going to work because the majority of people we invited had never studied chordoma before. We recruited them because of their expertise in other types of cancer and the approaches that they were taking. So everyone was hand-selected. We didn't know how many people were going to want to come to talk about this disease that affects 300 people a year.
So we had this huge invite list, and we said, "Well, okay. Maybe we will just be safe and invite 70 people first and see how it turns out." NIH had said we can have a budget for 50 people to come. It turns out that actually more than 50 people wanted to come. It totally blew our minds. We actually ended up having to turn people away. It was just unbelievably remarkable how much enthusiasm there was.
JULIA ROCCHI: So then after that, is that what prompted the foundation?
JOSH SOMMER: Yes. The foundation really sprung out of necessity. So the organizing committee for this conference was formed mid January. We incorporated the Chordoma Foundation, February 20th, 2007, and the Chordoma Foundation was a co-host along with the Human Genome Research Institute, National Cancer Institute, and the National Institute of Neurological Disorders and Stroke. Together, we kind of pulled off this workshop in record time in six months. Invitations went out mid March or early March for a meeting that was in early May.
JULIA ROCCHI: That's incredible.
JOSH SOMMER: It was really incredible, and for me gratifying and encouraging to see how much enthusiasm there was among the researchers and physicians and to see them come together at the workshop and see just hundreds of new relationships forming and just the exchange of ideas and the education. It was fantastic.
Really what emerged out of this workshop was a road map, a plan for how to get from Point A, which is this poorly characterized disease with few treatment options, to ultimately care. Now that we have the plan, we have the team in place. We have a plan to execute. Now, really, the foundation's job is to drive that plan forward, to see it through and to execute on that plan.
So, at that point, the foundation was still very new, an infant almost. Then we said, "Okay. Well, now we have to get our butt in gear and figure out how to run this foundation." We got 501(c)(3) status in October '07 and set our fundraising target of $250,000 by the end of 2007, which we thankfully met, and then things continued to move very quickly.
We partnered with the National Cancer Institute, again, to host the Second International Chordoma Research Workshop in April of 2008, which was 50-percent larger and 50-percent longer than the previous one, and the progress that had been made in the past 11 months was just staggering.
It seems like a lot of the questions that were raised in the first workshop had now been answered. Labs were independently confirming data coming from different directions. Particular genes or pathways were implicated in chordoma. To see where the field has come within a year is just remarkable to me.
JULIA ROCCHI: It sounds like a nonprofit's dream to have such phenomenal growth in such a short time since the foundation's inception, but I'm sure it wasn't all sunshine and roses all the time. What are some of the challenges you faced? Because there is always the day-to-day. There is always the nitty gritty of actually having to run a foundation and conduct daily business. So what are some of the challenges you faced along the way?
JOSH SOMMER: Well, initially, I would say the biggest challenge for me, and it continues to be a big challenge, is just time. When we started the foundation, I was working in the lab, taking classes, and trying to run the foundation, and really, thankfully, my mom and I have a real partnership. We work very well together. She is able to run a lot of the day-to-day, but you know, nonetheless, it was very challenging for me to try to juggle these three different responsibilities.
So I actually started taking a lot of independent study classes and kind of switched majors. I was taking molecular biology and cell biology and so learning all these new things and new concepts at the same time. So it just kind of became overwhelming, but at the same time, very simulating and exciting. No two days are the same. It is always something new, always new researchers contacting us and saying, "Well, I have this idea. I want to do this. I want to do that."
So, for me, what's really exciting is kind of putting the pieces of the puzzle together, so connecting the researchers, brokering different collaborations, transferring tissue or materials from one lab to another, analyzing the data, talking about the idea, so really kind of getting in depth in the science. So there is almost a constant tug between science and the reality of having to run a sustainable organization.
My mother and I had been wishing for someone to come along and kind of help out with the organizational development. This was right after we received our 501(c)(3) status. We were just kind of wishing to one another, and about two days later, we got an e-mail from a woman named Heather Lee who happened to live in Chapel Hill, which is 15 minutes down the road from where I lived.
She said that her son, Justin, had been battling chordoma for five years, and that the family had really wanted to get involved in some way, that they had considered raising money and starting their own foundation potentially. She said let's get together and see what we can do to help. It was almost like a match made in heaven. It was spectacular.
Heather happens to have extensive nonprofit experience. She was the vice president for Easter Seals for seven years. She is a professor of psychology and human resources at a local university. Her husband is a Duke grad. Together, they have a consulting firm for local governments and small businesses and nonprofits. I mean it was perfect. She just really helped a lot.
Also, meeting Justin for me, we really bonded. It put a personal face on it. For me, working in the lab, you have to remove yourself sometimes. You have to be objective. So, having Justin close by and just seeing the courage that he had, he has really been struggling with his tumor.
In fact, yesterday, he had an emergency surgery to remove the tumor which has been growing. He's just really been going through a rough time recently, but with the partnership that we formed with Heather and her family, Heather has actually become a board member now. We have expanded our board. We have just recruited some really fantastic people. That has really helped.
Now we are kind of in this phase of expanding our staff, hiring a director of operations, hiring a patient navigation coordinator to help really guide patients through the medical system.
I would say another big challenge we are facing is just being inundated with the requests from patients, so people just having no clue what to do. I would say that being a chordoma patient is extremely difficult, and patients are just searching for information about treatments, about physicians, what do I do if I have a recurrence, where do I go, and we would really like to be able to help, but we are constrained for time and resources. So that is a big wish of mine to be able to set up a patient navigation coordinator to be able to help guide patients through the medical system.
JULIA ROCCHI: That is terrific that you are able to do all of that right now. You have mentioned your mom a lot, Simone, who is a physician and a master's in public health. You have also been extolling the value of the partnerships that you have had with people like Michael Kelley and Francis Collins and Heather and Justin and this amazing group of people that you have worked with. How do you maintain and maximize those relationships? Obviously, they are critical to your work, so they would be in any nonprofit or foundation goal. So how do you stay on top of it all and really make the most of your connection with these people?
JOSH SOMMER: It is difficult. I probably have 1,000 to 2,000 people on my radar screen. So keeping track of everyone can be very difficult, just writing e-mails and staying in touch. In the case of the people that you mentioned, my mother, Heather, Dr. Kelley, some of the other people we are working with very closely at Duke, it is daily communication.
When you have a core group of people that you stay in touch with and that you build a team with and you are working together on projects and towards common goals, that becomes easy.
The difficult thing is when you meet someone at a conference or when you come across a potential donor and investor, and really taking the time to develop those relationships and follow up can be challenging.
I would say in the best way, it is just to stay in touch with people and form relationships, to work towards a common goal, to work on a project together.
JULIA ROCCHI: You mentioned e-mail. Are you using any other technology to help you manage this, not just the relationships, but the project and the research? What are some of the methods you use to help?
JOSH SOMMER: I would say that previously, we did not have a good method or method that I would advocate, but we have been implementing Salesforce -- Salesforce.com. They have a program where they donate licenses to nonprofits, and Salesforce is a tremendously powerful tool. Maybe in some cases it is too powerful. It is sort of almost like you have to hire a consultant to help you implement it, but I think it is going to really transform what we are doing because it allows us to keep track of everyone in our universe, so donors, patients, researchers, physicians, potential partners, and it allows us to keep track of every interaction we have had with every individual to track relationships between individuals, to track donations that people have made.
We are also using it to manage our grants review process. Actually, we will be using it to manage our patient navigation system. So, really, it is a comprehensive solution. I say that, but we haven't actually started using it yet. [Laughs.]
We have designed a database, and it is currently in India being implemented. In the next week or so, it should be finished. So, knock on wood, hopefully that is going to really transform what we are doing.
JULIA ROCCHI: Terrific. Now that you are over a year or so into this whole process, when you look back, what do you wish you had known going into it, if anything?
JOSH SOMMER: That is a good question. I mean it is so hard to say because there is no way that I could have predicted that we would be where we are today when I went into it.
I went into it with the mentality of an engineer. I saw a series of very limiting steps that were preventing the reaction almost. I mean I almost look at it in terms of a chemical reaction. You have these different agents, all the different pieces that need to interact just the right way to get to the product that you want, and there are a number of very limiting steps. I had mentioned access to the tissue and cell lines, just the interpersonal relationships between the physicians.
So I kind of view it in this big-picture, systems-based approach and really just trying to be strategic about kind of eliminating the friction points, and then to do that, to be able to operate, as you say, on a day-to-day basis, there is so much that you have to do on the organizational side, managing volunteers, reaching out to patients, to donors, and the fundraising.
So I would say if I had to do it over again, I would, I guess, you know, try to become better at that side of things, the more organizational management side of things, but that is kind of a role that I am coming into as the new executive director, and I hope to learn more about it. I guess it will be a challenge to balance my curiosity and my passion for the science and for the conceptual with executing and having a budget, fundraising targets and executing on day-to-day running the foundation. So I think it will be a learning curve.
JULIA ROCCHI: So now for the million-dollar question. Obviously, your personal stakes in this foundation are a lot higher than probably many other executive directors that are out there. What is your prognosis for yourself and your health, and what is your prognosis for the foundation and its future work? How close are you to that cure?
JOSH SOMMER: One of the things about chordoma is there is no way to know for me personally. I mean I am thankful, extremely thankful, to have the opportunity to be helping and do what I'm doing, but I kind of constantly know that there is a possibility that the tumor will come back and just feel this tremendous sense of urgency to make progress, and not only for me but for hundreds of chordoma patients that I have now become close with and especially for Justin and other children who I have become close with who really, especially recently, have kind of taken a turn for the worse.
Every time you hear about someone passing away or someone becoming ill or having a recurrence, it adds extra fire. It makes you want to work faster and harder. I am working as hard and as fast as I can. So it is challenging. I always wish we could do more. So I am really kind of reaching out for support wherever I could find it and to make the foundation successful, so that we can move faster and try to find a cure and save these people's lives and hopefully save my life.
JULIA ROCCHI: Well, I have no doubt you will hit those targets and more in the years to come. Josh, I really appreciate you taking the time to speak with us today.
JOSH SOMMER: Thank you very much. It has been a pleasure.
JULIA ROCCHI: You can find more information on Josh and his work at www.ChordomaFoundation.org. Tune in next time!