Working Together

Steve Jobs observed that great things in business are never done by one person, but only by a group of people. If great things are to happen for children’s cancer research, the same truth will apply.

As the steward of a family foundation, the question that arises from my circle of influence is how can we get more foundations not just talking about collaboration, but also actually working together?
One answer is Four Pennies.

Four Pennies is a model for how foundations can raise money together to fund important children’s cancer research. Competition for limited donors is an obstacle for collaboration among foundations. We all want to improve outcomes for kids and at the same time grow the capacity of our own organization. Four Pennies reconciles those competing tensions. Through a creative use of technology that is easily replicable, Four Pennies leverages our collective voice while protecting our private purposes.

Four Pennies is a brand with an important message that can be used by anyone advocating for children’s cancer research. The National Cancer Institute (NCI), the largest source of cancer research funding, invests only four pennies of every available research dollar on children’s cancer research. Why is such a tiny fraction of our public dollars spent on improving cancer outcomes for children?

Although it is certainly true more adults are diagnosed with cancer than children, there are 70 potential life years lost on average when a child dies of cancer compared to 15 potential life years lost for adults. In addition, the span of the years lost for a child is among the most creative and productive of the human journey. When a child dies, society has lost a future scientist, teacher or entrepreneur. The lack of public investment in children’s cancer research is a justice issue that not only impacts families who lose children, but also impacts the common good. How can we imagine that four pennies is enough?

Since 1980, only three drugs have been developed specifically for pediatric cancer. In the past thirty years, survival rates of children diagnosed with brain cancer have pretty much flat lined. We must do better.

Prostate cancer, with an average age at diagnosis of sixty-six, receives more research funding from the NCI than all childhood cancers combined. I don’t want to die from prostate cancer, but if I do, I will have spent over four decades in the workforce, raised a family, been a leader in my community and church and have had the privilege of seven or more decades of life.

The average age a child is diagnosed with cancer is eight. Should the child succumb to the disease, chances are they will not even have completed grade school. Should they be fortunate to survive the cancer, the debilitating life-long side effects of the treatment will compromise their cognition, growth and fertility. Joining the workforce, raising a family and being a leader in the community may forever be out of reach for the child who survives.

Sick children have almost no voice in the public dialogue. They have no influential associations or high paid lobbyists working on behalf of their interests. If great things are to happen, it will require many of us working together to give them a voice.

Four Pennies is a concrete strategy for both raising private dollars and for joining our voices to advocate for more public dollars. Individual and collective fundraising campaigns can include #hike4pennies, #run4pennies, #shave4pennies, #bowl4pennies. The possibilities are endless and the model advances our collective cause while honoring the identity and independence of our own foundations.

Doing great things to advance pediatric cancer research may be out of reach for any one foundation. What is definitely within reach for all of us is creating more ways to work together to increase the length of years and quality of life for children diagnosed with cancer.

Together great things can happen.

Al Gustafson
Swifty Foundation
www.swiftyfoundation.org

 

The Journey Thus Far – April 2018

Hey, everyone! Just wanted to briefly update you all on how the journey has been thus far. I am currently writing from Claremont, CA–the suburb of LA that is home to Pomona College, my alma mater. In the two weeks since starting, I have walked 266 miles from the Mexican border to the mountain town of Big Bear. There I was picked up by two of my former football teammates (thank God for Austin and Smitty) and came back to school for a short visit–and to also have a bit of immunization work done for medical school matriculation in the fall. After wrapping up the evaluation Friday, I will ship right back up into the mountains and head westward along the Angeles crest before turning northbound into the Mojave desert and onward towards the Sierra Nevada mountains.

Up until now, the trail has been serene. The cactus- and chaparral-lined dirt path often zigs and zags across dry desert bluffs under the slow-baking, but not yet oppressively hot, sun. Every so often, a wispy cloud will provide a bit of relief, but the first stretch has been made more enjoyable by the still strongly flowing creeks from the winter’s snowmelt and my umbrella. The walking has been mostly along relatively flat trail with ascents and descents rarely striking too steep a grade. From the get go, the excitement has propelled me to do some bigger mile days than initially planned. This isn’t necessarily a problem, as long as my feet can withstand it. Although I will admit that, after a couple back to back 20+ mile days, a bit of foot pain had me worried for a possible stress fracture or plantar fasciitis. On the plus side, the quickened pace allowed me to take a couple unplanned detours to visit the wonderful communities along the trail (ie: in Julian I got free pie, ice cream, apple cider and beer!).

I have met at least 30 other hikers so far in the early season. They come from all walks of life, from all around the world for that matter, and in all ages and sizes. For some the PCT has been a lifelong dream, for others it serves as an escape from the corporate world, and for the rest, like me, it is simply a privileged opportunity to enjoy the best nature has to offer. I have hiked with a couple other hikers from time to time, but roughly half the nights have been spent camping alone or with someone new because I have yet to find a crew that fits well. Until then, I will keep hiking my own hike! One hiker that I would like to give a shoutout to is Jigsaw. He’s a fellow hiker that camped at the same spot for a couple nights in a row and even shared part of his personal water cache with me in the middle of the desert, which I never got the chance to thank him for. His real first name is Bruce and he comes from Rancho Cucamonga, and even though he is leaving the trail to move to Boise, I hope somehow someway I will get to thank you personally for that act of kindness.

Despite the relaxed nature of this first stretch, it has certainly had its unique challenges. In particular, the stretch from Idyllwild to Big Bear saw a comical array of conditions and hurdles that provided the first test to my hiker will. First, the steep climb out of Idyllwild brought us to the apex of the trail up until this point. With elevation at almost 9,000 feet, it was the first time that we were traversing long stretches of snow. The hiker-infamous Fuller’s Ridge on the north side of Mt. San Jacinto was easy enough with microspikes, but the descent brought us down into the notoriously windy San Gorgonio pass. Unable to set up my tent in the loose gravel and gusting winds, the night was spent cowboy camping (camping under the stars without setting up a tent) tucked under the shelter of a large chaparral bush. The next morning we crossed the desert in temperatures reaching the 90’s. Hiking while it’s that hot is manageable, but given that we were heading back up hill, a bit of strategic navigation from shady spot to shady spot was required. After departing a couple other hikers from the trail magic-filled reprieve under interstate 10, the trail headed through the mesa wind farms and further into the mountainous desert. A short stretch through the Whitewater Preserve was even precluded with a warning of feral longhorn steer and feral pit bulls that had recently charged a hiker and killed a calf, respectively (seriously, google it for more info). Afterwards, in the final push towards Big Bear, the trail followed mission creek for fourteen miles and roughly 5,000 feet of elevation gain.

Overall, the 86 mile stretch accumulated some 13,500 feet of ascent and descent and took me through some of the most remote-feeling land yet.

Part of it was simply the terrain. Having grown up in Illinois, the sheer lack of water and shade I think will be the most foreign landscape that I go through. At times during the slow and arduous climb up the creek, I found myself staring up at the cliffs half expecting a tusken raider to poke its head out from behind the boulders just like in the Star Wars movies I had watched as a kid. The other challenge was the remoteness. Three of the four nights ended up alone, and due to differences in hiking pace, most of the interactions had were only brief greetings with folks that would be soon out of sight. For whatever reason, I simply didn’t see a lot of people over the four days. Now hiking is inherently a physical exercise, but one could say that, especially during such periods of isolation, it serves equally as an exercise of exploration into the mind. It is interesting to see how one reacts to being cut off from our main sources of external stimulation. Given the circumstance of an extended physical challenge yet with nobody else around, I found that I felt mentally drained. The lack of interaction left me to keep my mind preoccupied, devoid of the stimulation that comes from the intellectual ping-pong when you’re around other people. Now typically, I will listen to podcasts (Vox, NPR, NEJM, and The Daily are some of my favs. Any other recommendations?) to provide some food for thought, but it is safe to say that, humans being an inherently social species, I’m looking forward to being around more people along the way.

 

–Eric

Eric’s Personal Statement

On March 18, with a pack weighing no more than 25 lbs, I will embark on a quest to walk from Mexico to Canada—literally. The Pacific Crest Trail runs 2,659 miles along the western spine of mountains, and for me, it often served as a refuge during the stressful trials of being an undergraduate with dreams of reaching medical school. The day hikes and overnight camping trips planted the seed that has blossomed into the coming journey—an aspiration to trek byfoot from the Mexican border, across the deserts of Southern California, through the Sierra Nevada and Cascade mountain ranges, before arriving in Manning Park, Canada. The idea is to combine my passions of hiking and science to raise awareness and funds for pediatric brain cancer research.  And hopefully, by following my progress, the endeavor will teach and excite people about the history, geology and ecology that are preserved by the US National Trails System.

Why pediatric brain cancer research:
My friend’s brother, Michael Gustafson, died from medulloblastoma at the age of 15. Michael’s story hits home to me because, at its fundamental level, it epitomizes the human narrative of disease. When faced with the immanence of his mortality, Mikey decided to fight tooth and nail for what was most important in his life. This is the purpose I see for medicine—not just to alleviate pain, not to simply live longer, but to provide people the quality to pursue life in the manner they deem most meaningful. The limits of the cancer treatments available let Mikey down, but I firmly believe that the journey of a thousand miles—whether to hike the PCT, or to find a cure for pediatric brain cancer—begins with a single step. In this case, the intention is to raise four pennies for each step.

 

Four pennies is significant. Currently the National Cancer Institute, the largest source of funding for cancer research, invests only four pennies of every research dollar on children’s cancer research. The average age an adult is diagnosed with cancer is 66 while the average age of a child is 8.  A child’s death from cancer accounts for 58 more years of life lost. Even when children survive their cancer, more than 75% of them have serious side effects for the remainder of their lives due to the treatments they endured. Given the number of years lost and the quality of years lost, science must do better, but it needs the resources to do so.

 

My goal is to raise four pennies for each of the more than 4.6 million steps it will take me to complete the PCT. The $185,000 raised will fund a clinical trial for children with Diffuse Intrinsic Pontine Glioma, a brain cancer with a median survival rate of 9 months from diagnosis.

Throughout my hike, I will be inviting students from elementary through high school, and any other learners, to virtually companion me and discover the magnificence of the ecosystems that make up the PCT, learning about their geology, ecology and the history of the National Trails System. We will walk along together as I figure out how to survive four months on the trail (did I mention I have never done this before!). Those accompanying me will also learn about the challenges of pediatric brain cancer, and perhaps get involved in raising much needed funds and awareness.