Working Together to Help Get Brain Tumors Off Kids’ Minds

Our daughter Kortney Rose Gillette was a vibrant, happy child who had just celebrated her ninth birthday when I noticed that her eye had crossed. An MRI soon revealed that Kortney had a Diffuse Intrinsic Pontine Glioma (DIPG) tumor in her brainstem. This type of brain tumor is the deadliest for children. DIPG tumors form in the area of the brainstem that controls a child’s breathing, blood pressure, heart rate and other vital functions. Today, there is no effective treatments for these fatal tumors and they cannot be removed through surgery.

While Kortney was in the hospital, the doctors told us that the federal government funds 98 percent of cancer research in the United States. Unfortunately only 4 percent of the National Institute of Health (NIH) annual cancer research budget goes to pediatric cancer research; the rest goes to adult cancer research. Already dealing with a dying child, then hearing this fact, I became compelled to take action. Right after Kortney’s passing we began The Kortney Rose Foundation (KRF) to fund research and raise awareness for pediatric brain tumors. Our Foundation slogan is “Help Get Brain Tumors Off Kids’ Minds”. I honestly don’t like asking for money and  never had plans to be a fundraiser, but life had other plans!

On April 27, 2006, just four months after diagnosis, Kortney succumbed to DIPG. We knew we had to take action to help make a future possible for other children threatened by this disease. Our vision is to create a world where brain tumors are preventable and/or curable so no parent, will hear the words we did, “There is nothing we can do to treat or cure this tumor; it’s about providing Kortney with the best quality of life for the time she has left”.

The median survival time for this tumor is 9 months. Although, DIPG tumor research and finding a cure holds a special place in the KRF’s heart, the foundation funds all types of pediatric brain tumor research and is responsible for nearly $2 million donated to pediatric brain/central nervous system tumor research, and was an original research partner that helped to establish the Children’s Brain Tumor and Tissue Consortium (CBTTC). Our hope was always to fund collaborative “team science” research. Through our partnership with the CBTTC and the relationships and tools they’ve built we are doing just that.

In March 2018, Al Gustafson of the Swifty Foundation, invited The Kortney Rose Foundation to team up with their foundation, Pediatric Brain Tumor Foundation and Dragon Master Foundation to help launch Four Pennies, a collaborative crowdfunding campaign for childhood brain tumor research.  With our interest in collaborating on all fronts, it seemed an apparent next step that the foundations who fund collaborative research would work together in the same manner. KRF was a primary funder, and continues to be a large supporter of the Open DIPG research project, so teaming up with other foundations and Eric was another great opportunity to spread the word and fund research for DIPG and beyond.

 

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

 

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.