Josh Sommer

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2008

Josh Sommer

Chordoma Foundation

http://www.chordomafoundation.org

Greensboro, North Carolina, United States

Health

The Bold Idea:

Pioneering a system to rapidly translate advances in biomedical research into meaningful knowledge and effective treatments for patients with overlooked cancers.

Many rare cancers, which together make up a substantial fraction of all cancer, have few effective treatments, receive little or no research funding, and do not have enough profit potential to entice drug company investment. Without an organization accountable for leading a coordinated research effort, progress toward a cure for these diseases stagnates. Thus, patients with rare cancers do not adequately or fairly benefit from advances in biomedical research, and many thousands die each year for lack of treatments.

The Chordoma Foundation guides patients through the complex medical system to ensure that they receive the best care possible, while enabling patients—the most motivated stakeholders in the treatment development process—to participate in research. The Chordoma Foundation will take a big-picture, systems-based approach to the problem of curing chordoma (a rare cancer of the skull and spine) by formulating research priorities, recruiting the best researchers, proactively distributing new data, initiating new projects, brokering collaborations, and breaking down barriers to progress.

Josh Sommer pitching at Echoing Green Selection Weekend (May 2, 2008)

Biography:

After being diagnosed with chordoma during his freshman year at Duke University, Josh Sommer was unwilling to accept the poor survival and limited treatment options that face chordoma patients. Originally a civil and environmental engineering major, Josh set out to find a cure by studying the genetics of chordoma in an oncology lab at Duke and now leads a multidisciplinary team of scientists and doctors working hand-in-hand with patients to find a cure. Josh has been featured on the TODAY show and was recently named ABC News Person of the Week for his efforts to cure chordoma.

Moment of Obligation: What experiences led to the desire to start your own organization?
When I returned to school after surgery I discovered that the only NIH-funded chordoma researcher was an oncologist at Duke named Dr. Michael Kelley. Soon after I joined his lab and enrolled in a molecular biology course. I was astounded by the sci-fi technology we used to probe cancer cells on a molecular level, and was inspired to learn that this detailed biological understanding had, for some tumor types, been used to develop curative targeted therapies. I also saw firsthand how logistical challenges prevented advances throughout the field of oncology from being brought to bear on rare cancers like chordoma. Thus, I soon realized that working in the lab wasn’t enough to achieve my goal of curing chordoma—it would require a coordinated, international, and multidisciplinary research effort and an organization to lead this effort. Finally, after meeting other chordoma patients, I realized that we, the patients, are the most motivated stakeholders in the treatment development process, yet for the most part, patients are powerless to help bring about a cure for their particular disease. So, the Chordoma Foundation was born out of an effort to accelerate research by breaking down the barriers and empowering patients to play an active part in their own cure.

Gall to Think Big: What has given you the ability to dream big and take on deeply entrenched social and difficult problems? (Such as experiences, skills, events, etc.)
The simple answer is that I’ve had a great role model—my mother. As a public health physician she got frustrated treating preventable diseases, so she came up with a new health-care delivery model and started a company to improve the health of employees, and cut health-care costs, by detecting, diagnosing, and treating health problems early. During my freshman year of high school, both my mother and I became ill and evacuated our home because of toxic mold. We both realized that our personal catastrophe, which affects millions of Americans, is completely preventable, so we formed a coalition to advocate for research and legislation to combat the mold problem. As the legislation we were supporting stalled in committee, I shifted my efforts toward fighting the problem on a scientific level, and teamed up with a classmate and local professor to develop a method for detecting mold-produced toxins in the air. Looking back, the advocacy and research I did to fight mold feels like warm-up for fighting chordoma.

New and Untested: What's innovative about your new idea for social change?
The Chordoma Foundation takes a systems approach to curing disease. Our goal is not simply to fill the “funding gap” or the “attention gap” facing orphan cancers. Our goal is to develop effective treatments, and ultimately a cure, by marshaling key stakeholders (patients, doctors, and scientists, etc.) and resources from all over the world to solve the problem from start to finish; much like Boeing does to design a new plane. We draw upon the tremendous amount of information and technology generated across the field of oncology and create opportunities for chordoma to benefit from advances in other cancers—this is analogous to translating technologies and discoveries from the first world to the third world.

Seeing Possibilities: What are the most important qualities to be a successful social entrepreneur?
This is a question I am still asking, so my answer is a work in progress. From my limited experience and observations, it appears that successful social entrepreneurs don’t set out to start organizations; rather the organizations that they start grow out of their own personal mission to solve pressing social problems (not just to fill a need, but to eliminate it). For the organization to be successful the entrepreneur must spot opportunities, think unconventionally, boot strap when necessary, and most importantly, be able to assemble a great team and strong network of supporters.

Which musical artists/albums get you going and keep you inspired?
My music collection has not really grown since the original Napster went under, so I guess you could say that my musical tastes are stuck in the 90’s. Music in general puts me in a good mood, but I’m not particularly inspired by the lyrics. If I have a chance to listen to my iPod, I usually pick an audiobook.

What books do you recommend (pleasure, work and anything in between)?
A Brief History of Time by Stephen Hawking and Collapse and Guns, Germs, and Steel by Jared Diamond are among the most fascinating books I’ve read. If they don’t give you a sense of wonder and respect for the world nothing will.

Blink and The Tipping Point by Malcolm Gladwell, Linked by Albert-Laszlo Barabasi, and The Long Tail by Chris Anderson have all had an impact on the way I look at the world and approach problems.

Which websites do you visit often (work and/or personal)?

• google.com (Much of my day is spent using Google Apps - gmail, calendar, docs)
• salesforce.com (Recently I’ve been using Salesforce.com in conjunction with Google Apps to run the Foundation.)
• nytimes.com
• technologyreview.com (I get news from the New York Times and Technology Review in my inbox every morning, which usually leads me to those websites.)
• comedycentral.com (I don’t have a TV, so for entertainment I watch The Daily Show on comedycentral.com )

What advice or quote do you keep close to your heart as a social change leader?
Shortly after being forced from my home by toxic mold I came across a quote by Nelson Mandela’s that I have taken to heart: "The greatest glory in living lies not in never falling, but in rising every time we fall." Since being diagnosed with cancer, this message has taken on even more significant meaning for me. It reminds me to continually look for opportunity in adversity.