Advocacy in Childhood Cancer
Jonathan Eric Agin
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About Jonathan Agin


         My journey began on April 10, 2008. That is the day I received the frantic call from my wife that our then 24 month old daughter, Alexis Agin,  had a CT scan that found a mass on her brainstem. As the next days unfolded, and we learned that Alexis had an inoperable brain tumor known as diffuse intrinsic pontine glioma (DIPG) the transformation began. Although I could not have understood it at the time, being thrust into the pediatric cancer community would become the most formative event of my life. Alexis’ battle lasted a very long 33 months. She battled with a dignity and spirit that typified her resolve. An inspiration to many around the world, Alexis truly became my hero, a role model for all my actions going forward.

         A lawyer by trade (partner with the law firm of Taylor, Sylla & Agin, LLP), a father, husband and endurance athlete by hobby, I soon became a childhood cancer advocate in a selfish and desperate attempt to save Alexis from a tumor with a 99% mortality rate in the first year following diagnosis. I soon entered the world of pediatric cancer foundations by serving on the board of directors of a foundation that aimed to raise awareness and family support for families battling DIPG. From there, I joined with my wife Neely in forming the Team Alexis, Washington, DC Chapter of The Cure Starts Now. Together, in 2009 we created the Race Against the Odds, A Team Alexis 5k for Pediatric Brain Cancer Research. Since that first race, the Race Against the Odds franchise was created and has now grown into multiple locations as has our race, which has transformed into the umbrella race for the series as the National Race Against the Odds. In four short years, we have raised over $300,000.00 for pediatric brain tumor research.

          We continue the journey that Alexis took and we do so until the cure and better treatments are discovered. There is much work to be done and 2013 plans to be a very ambitious year. I will continue my role as a childhood cancer advocate, steering committee member of the DIPG Symposium, author, husband, father, attorney and endurance athlete. Through these activities I hope to raise as much awareness as possible for our children diagnosed with cancer. Awareness translates into potential funding. Potential funding translates into a potential cure. Until the cure rate for childhood cancer is 100% those of us in the childhood cancer community have a tremendous amount of work left. 

 

There is no stronger voice than that of a parent whose child has endured a life-threatening disease. Jonathan's dedication to raise his voice on behalf of our nation's youngest cancer patients is truly motivational. His passion to shine a light on the need for effective treatments for this disease is the energy through which childhood cancers will eventually be cured. 

Ruth I Hoffman, MPH

Executive Director, American Childhood Cancer Organization