The Reluctant Advocate; My Own Words:
I have already had the honor of being introduced to the Max Cure family by Vice-Chairman Richard Plotkin, accordingly I will spare everyone the details of my background, how I came to work with the Max Cure Foundation and what I will be doing.
The truth is, I would prefer not to be working with the Max Cure Foundation. I sincerely wish that there were no such thing as the Max Cure Foundation for one simple reason. I wish that foundations like Max Cure simply did not exist. If there were real cures for all children with cancer, and treatments that did not cause serious life long side-effects, perhaps there would be no need for private foundations to raise money in a desperate search for more effective and less toxic treatments. If this were the reality, I would still be able to hold my daughter Alexis who passed away from DIPG in January 2011. The truth is, I never would have chosen childhood cancer advocacy work but for Alexis’ diagnosis and passing. Many people who have not had a child diagnosed with cancer work tirelessly on behalf of the children. I for one though can say childhood cancer was not on my radar screen. It was not the cause I chose; it chose me.
When Alexis was first diagnosed, my wife Neely began maintaining a Caringbridge Journal. This was a way to keep family and friends informed about Alexis, her treatment and how she was doing. I was not a writer and wanted no part of this exercise. Several weeks into Alexis’ journey, Neely asked me if I wanted to write an entry in the journal. I reluctantly agreed to, and then passed the computer back over to her. This pattern continued for several weeks until ultimately, I found my voice and discovered that I was in fact a writer. And thus began a new path along this journey to utilizing my words to inform people about childhood cancer, the lack of overall federal investment for research, lack of drug development, lack of drug availability and all issues related to childhood cancer. This was empowering.
I transformed based upon necessity and passion into a childhood cancer advocate. Along the way I have been fortunate to testify before Congress, speak at numerous gatherings, submit articles for various publications, appear on television and radio programs, meet with many members of Congress, the White House and the National Cancer Institute and much more all in the name of children with cancer. I have done so with the belief and hope that I, along with so many other parents can and will make a difference and help out children and families who are facing this horrible challenge. I have met many amazing people who like me never wanted to be in this fight but did not have a choice. And I have seen hope through the work that we are doing together.
I will say it again: I wish I did not have to work with the Max Cure Foundation. My life and so many other lives would be dramatically different. However, if I do have to be in this fight, I am proud to play a small role with the Max Cure Foundation to help ensure that one day, there is no need for the Max Cure Foundation, and that childhood cancer will be universally survivable with an ending that reads: everyone lived happily ever after. One day.