Google describes Moonshot Thinking as “Thought leaders who live in the grey area between audacious technology and pure science fiction.” President Obama, has appointed, nay, charged Vice President Biden with the #Moonshot program to get cancer cured in our time. This undertaking is akin to President Kennedy asking that a man be landed on the moon, thus the term Moonshot. I would go so far as to say that, as Google defines Moonshot above, so I dare to define the “pure science fiction” part of the above as the equivalent of finding a cure. Yet, it is within our reach, isn’t it? Like the man on the moon, hot pockets and self-driving cars. It is possible.
If we, as a community of researchers, clinicians and survivors could all put our intellectual properties, experiences and findings into a big, collaborative pie, we could save ourselves and our families – and the biggest win of all, our kids with cancer. If we could take a clue from the technology sector, who are pioneers in Open Source Coding, we could do this. By making coding and web-based platforms open source, everyone has access. Elon Musk of Tesla has opened it’s files and patents to all comers. This is not a threat to Tesla as an organization, on the contrary, it has made Tesla the go-to leader as a source of innovation for creating a better car for people and their environment. He has said, “We believe that applying open source philosophy to our patents will strengthen, rather than diminish Tesla’s position.” Can you image what this thinking would have on cancer research, treatments and a cure?
What if we began operating as a symphony – as opposed to individual instruments? What if our island chain of research, experience and expertise came together as a nation of dedicated individuals to cure cancer and reduce suffering? I hope that Moonshot is just that powerful. As a caregiver when my husband had cancer, a cancer patient myself, and a witness to far too much suffering in and out of the pediatric cancer center. I want a seat at that table. I want to make it better. Put me in coach. Let’s defeat this opponent and stop it forever.
Here is my letter to Vice President Biden:
Dear Mr. Vice President,
My sincerest condolences to your family on the tremendous loss of Beau. He will be remembered.
Moonshot is an important and noble cause. At age 43 my marathoner husband was 2 years post-treatment for tonsillar cancer and I was training for a half marathon, when I experienced pain in my knee. It turned out to be osteosarcoma, a rare pediatric primary bone cancer. Age notwithstanding, my treatment was in the Pediatric Cancer Center at Memorial Sloan Kettering in NYC, as my disease is a pediatric one. For nearly a year, I was treated with kids who had cancers that took limbs and lives away from them and their families.
Less than 4% of the nation’s cancer budget is spent on all childhood cancers. There have been no new drugs for pediatric cancers in over 20 years. Yet, when you cure cancer in a child you give them an average of 72 years of their lives back. Collaboration between clinicians, researchers and patients is essential. The Tech Sector has shown us that open source research and best practices have made for rapidly improving and accessible internet and devices. I am a member of an online patient collaboration group for osteosarcoma. We have made each other’s lives significantly better in treatment and in loss through open-sourcing our treatments and experiences.
My organization, M.I.B. Agents (www.mibagents.org), based in VT, undertakes the mission to Make It Better for kids with cancer by pairing a child in treatment with a child who survived their same cancer. The surviving child writes a letter of hope and support to the child in treatment. Additionally, we create experiences for children and young adults who have been “sent home” when treatment options have been exhausted. The goal is that the child LIVES their final days, and the surviving family has happy memories of their last times together. (VT Standard – http://bit.ly/2091OFQ)
Still, as you well know, it is not enough. Not by a lot. Even if a child survived their cancer, they may not survive the adult treatments they are given. Infertility, heart, liver, kidney, bladder, hearing and decreased cognitive function will be ongoing troubles for the child lucky enough to survive.
There is much to be done. This experience of having a childhood cancer as an adult, gratitude for the courage shown me by my fellow pediatric patients, as well as a healthy dose of survivor’s guilt compel me to need to fix this, to make it better. Will you please pull up a chair for me and pediatric cancer patients at the Moonshot Table? I am in on this fight!
With Hope and Kindest Regards,