Into Fearless, Uncharted Territory: The Brain Cancer Expedition

This post was written by Max Wallace on behalf of the Case Foundation: 

We often say that Accelerate Brain Cancer Cure’s role is like that of Lewis and Clark — we go out into the wilderness, create new trails, and send back maps for others to follow. In our case, the wilderness is brain cancer. This year, our small expeditionary and experimental team will build the first model system that will enable a large number of patients to have their brain tumor fully profiled and then use that information to help them get the most state-of-the-art treatment for their exact tumors. We’re calling it the “Precision Medicine” project and we believe it’s a disruptive innovation that can revolutionize the field.

Today, 41 people in the U.S. will die from the most common form of brain cancer called glioblastoma multiforme (GBM). This happened yesterday and, unless something changes, it will happen again tomorrow. Sadly, we are still using the same basic treatment tools and techniques that we have used for decades and, in spite of our best efforts over that time, the average life expectancy for a GBM patient is still about a year.

However, brain cancer research is about to change dramatically thanks to advances in technology, and it’s our moment to let urgency conquer fear. Genetic information and robotic and nano processes are intermingling and leading us into a new era of genomically-informed “precision” medicine. Our understanding of the genomic basis of cancer is increasing at an exponential rate. We now know that not all cancers are the same, even those which arise in the same organ. More and more people are being treated with new therapies targeted at changes specific to their individual tumor.

We are also beginning to understand that one type of cancer may use the same types of biochemical pathways as another type of cancer. This raises the possibility that a drug that works for one (e.g., melanoma) can be selected and quickly adapted for use against another with a similar molecular profile (e.g., GBM).

Not long ago, it cost tens of thousands of dollars to have a tumor profiled and you could only do it in a handful of academic laboratories. These technologies are being standardized and the cost of doing a tumor profile has now dropped to around $5,000 (and will continue to fall). Even at current levels, we can begin to integrate tumor profiling into regular brain cancer care.

Our “Precision Medicine” project will bring together researchers, clinicians and, most importantly, patients to take advantage of these new opportunities and help develop the most state-of-the- art personalized treatments. If the system works, we believe that we can transform research approaches and clinical practice. If we can do that, 12 months of survival might become two years, and two years might become four, and so on and so on. At that point, brain cancer will no longer seem like such an impenetrable wilderness.

Max Wallace is the CEO of Accelerate Brain Cancer Cure, an initiative co-founded by Jean and Steve Case.

Facing the Fear of Thinking Big

Written by Gisli Olafsson on behalf of the Case Foundation: 

NetHope collaborates with 35 leading international humanitarian organizations to better serve the developing world through innovative technology and communications. Their focus is on five practice areas: Connectivity, Field Capacity Building, Emergency Response, Shared Services, and Innovation for Development. NetHope’s Emergency Response Director Gisli Olafsson writes about making big bets and reaching beyond your bubble in the face of fear. He was recently named a finalist for the Microsoft Alumni Foundation’s Integral Fellow Award for his leadership in the field of emergency response and especially telecommunications and information management. Olafsson has worked in the sector for more than 20 years.

“Be the change you want to see in the world.” – Gandhi

I remember how I felt the first time I read the quote above: it profoundly touched me and gave me the additional courage to keep advocating for the change of things I feel are inefficient or simply wrong. It is never easy to be the one that raises questions about the status quo. It is certainly much easier to take no action and use the excuse that “this has the way it’s always been done, so why change it.”

Many people talk about money and technology as keys to being able to drive development in emerging markets. But interestingly enough, money and technology usually aren’t the biggest hurdles when trying to address huge issues. It turns out that the more technologically difficult a problem is, the more smart people can be mobilized to find a solution. I have also found that the bigger the problem, the more likely donors will be interested; they understand the big impact solving a big issue can have and they are tired of endlessly funding small steps that often never lead anywhere.

The most difficult hurdles you face are usually political, organizational or personal in nature. Achieving a consensus, building partnerships, establishing a common vision and getting people to think outside of their own little box requires the biggest effort. Every time you introduce a new vision, new idea or a new way of addressing things, people and organizations are afraid that it will make their current role irrelevant, leading them to lose funding or jobs: helping others overcome that fear is the difficult task of change leaders.

I have had the great opportunity over the last year to bring together a broad partnership of organizations and individuals who believe in the power of open data in humanitarian response under a program we at NetHope chose to call the Open Humanitarian Initiative.

Bringing together all of these different organizations around the common vision of improved humanitarian response has not been easy, but by investing time in understanding our partners fears, concerns and needs, we are getting close to bringing about big impact to our field. Later this fall we will be formally launching this initiative then it will be one of the broadest and most ambitious public-private partnerships ever in the humanitarian sector. By facing our fears and helping others do the same we have been able to bring together enough critical mass to cause humanitarian response to move from the industrial age to the information age.

Bringing these different organizations together and helping them face their fear of collaborating has been a learning experience for me. It has helped me understand that my own fear of thinking big is one that is worth facing, because the bigger your vision, the more impact you can have on the world we live in.

Resolving to be more fearless and do more good in 2013

Looking back on our resolutions for 2012, we’re pleased to see that we can check most of the items off the list in some way or another. We did more #GoodSpotting throughout the year, traveled to new places, voted in the presidential election, and ran half marathons. While our meetings may not always be efficient (we like to have some fun, too!), and no one learned to knit, we are giving each other some high fives for being fearless and challenging ourselves to new opportunities and adventures.

This year is no different – we believe it’s possible to be even more fearless and to do even more good in 2013, and we hope that you’ll join us and add some of your own resolutions, goals, and big ideas for next year, in the comments, @casefoundation on Twitter, or on our Facebook page. Here’s what’s on tap for us:

  • Take the pledge to Be Fearless (again!).
  • Live a more healthy life: less caffeine, more sleep and exercise, and healthful dinners.
  • Get more involved in our local community, through volunteering or experimenting with a new hobby.
  • Become an advocate for the causes and charities we are most passionate about and raise awareness for their issues.
  • Run and complete a 10-mile race…and someone else wants to run their first half marathon.
  • Focus on my family more, send them letters, call and show them how much I appreciate and love them.
  • Research and support new nonprofits doing fearless work.
  • Start biking to work.
  • Be grateful for all that is around us.
  • Learn to cook more meals from scratch.
  • Dedicate time each week to artistic endeavors like drawing, painting, or sewing.
  • Set more boundaries – personally and professionally, and be accountable to them.
  • Tell our loved ones how much they mean to us – not later, but now.
  • Challenge more team members to the No-Counter-Food Challenge.
  • Do one big fearless thing next year, and find little ways to be fearless each day.

So what would you add to this list for yourself? How will you pledge to be more fearless in 2013?