It may surprise people not directly impacted by childhood cancer to learn that as a disease population children diagnosed with cancer and their families struggle immeasurably in comparison to that of other adult disease populations. The reason for this is based upon a combination of factors. One of the biggest reasons is that childhood cancer drug development lags significantly behind that of the adult population. This is a situation that is thankfully being addressed by many organizations, motivated researchers and pharmaceutical companies alike. Nevertheless, to alter this paradigm will take considerable time and thus those of us working to make a difference presently have to fight a war on several fronts. Childhood cancer, as an underserved disease population, is gaining significantly in profile and awareness thanks to a number of extremely visible supporters to the cause.
Enter the Dragons, the Imagine Dragons. In July 2014 I received an email from a member of the Board of Directors for the Tyler Robinson Foundation. She had one simple ask: schedule a telephone conversation to discuss childhood cancer research and advocacy. At the time I had not heard of the organization so I quickly went online to learn more. To be fair though, there are hundreds of childhood cancer organizations in existence, all created and founded for the same purpose, to help children and their families who have to face this disease. During the course of the conversation, I learned more about Tyler who was diagnosed with Rhabdomyosarcoma, a very difficult form of cancer to treat, who had been taken by the disease in March 2014. Tyler's family, along with this little band (at that time) called the Imagine Dragons, began the foundation in an effort to provide assistance to families of children in the fight against cancer that struggle as a result of the strains placed upon them. I soon learned more about the organic story of the band's connection with Tyler, and how and why they took a stand in an effort to use their platform to assist other families in this fight.
Dan Reynolds, the lead singer explained it this way. "There's an endless supply of good causes to be involved in. But this one just happened to become really personal to us because of our experience with Tyler Robinson and his family." Tyler was totally unknown to the band until that first show when he and Dan sang together. The two texted together quite often after that moment and became truly close until Tyler's passing. "It's been a journey since that time getting the foundation started, but it's also been really healing for the band and for Tyler's family to help out other families in need," said Robinson.
Back in November 2014, my wife and I, along with Charles Keller, MD, the Scientific Director of the Children's Cancer Therapy Development Institute, were invited to Las Vegas to attend a gala for the foundation. After our initial call, the discussions continued to focus upon advocacy, awareness and research. My involvement with the Children's Cancer Therapy Development Institute provided additional discussion points for the future. We were honored to meet the band and hear them perform an amazing four song acoustic set that quickly demonstrated the emotion and veracity of their commitment to this cause. For the members of the band, this affiliation is not simply meant to fill a resume and sell some albums. "Dan took the loss (Tyler's death) pretty hard for a few reasons, but that loss was quickly channeled into a feeling that we should do something to honor him." Remarked Mac Reynolds, band manager and Chairman of the Board for the foundation. The band's investment in the cause and the mission of making the journey of childhood cancer a little easier for kids and caregivers who have no choice is clear. "It's hard enough dealing with the emotional fallout that comes with cancer, and yet so many families find themselves unable to afford basic things like their rent, food, clothing, and utilities. We are able to step in and take care of much of that burden so families can focus on the things that matter." Said Reynolds.
The takeaway here is that with engagement by the entire community, and a little bit of star power, childhood cancer is gaining significant awareness and attention. To combat the entire problem of childhood cancer, from the development of less-toxic and more effective treatments, along with the economic burdens of the disease upon families, we truly must be a community united around the end game of helping children and families. Ultimately, it may take some dragons, a cup or two of lemonade, a few shaved heads, lions roaring beyond barriers and innovative research in Fort Collins, Co., to tackle the problem, to name a few. But the illustration is that we are a community focused upon better results for children with cancer and their families. It takes a village and a community to effectuate change. And sometimes it takes a handful of dragons along the way as well.