The Difference of a Decade: A Conversation with Childhood Cancer Advocate Jonathan Agin

This edition of Childhood Cancer Talk Radio gives a personal look at the landscape of childhood cancer advocacy over recent years.  For this, I have the honor of sharing conversation and perspective with fellow advocate Jonathan Agin, whose participation in the childhood cancer community spans this past decade and beyond; the great legislative advances made, the grassroots development of resources for families, and the wealth of leadership grown from tragedy in the childhood cancer advocacy community have all played key roles.  From this perspective, we take a look at the actual progress made for our children who become diagnosed with various cancers, the still deadly and lesser-known yet largely prevalent subtype of childhood brain cancer, with a hopeful look toward the near future as the need for greater research into causes and conditions begins to get more attention with the Childhood Cancer Prevention Initiative. 

Jonathan Agin brings significant legal, biotech, corporate management and parental experience to the field of advocacy. Having spent over 20 years in the practice of law, 16 of which were as a full time litigator in Washington, DC and Maryland, he transitioned from legal practice and the law firm that he co-founded following the loss of his daughter Alexis to pediatric brain cancer (DIPG) in January 2011.  In 2014 he co-founded a non-profit biotech in Beaverton, OR, the Children's Cancer Therapy Development Institute, where he was the general counsel, institutional official and development liaison. In addition, from September 2015 through 2020, he was Executive Director of the Max Cure Foundation, was recently elected to sit on the NCI Brain Malignancy Steering Committee assessing paediatric and adult clinical trials; he was an original founding member of the DIPG Collaborative, sits as an editor and contributor for the Canadian Oncology journal Cancer Knowledge Network, and is a frequent contributor to the Huffington Post writing about childhood cancer.

Most recently, In January 2021 Jonathan formed PREP4Gold (Preparation, Research, Education and Programs for Childhood Cancer--formerly Connor Cures) and serves as Executive Director.

 

 

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About Janet


Blessed with varied interests and an artistic and musical upbringing, Janet had health challenges throughout her young adult life. Despite these she graduated Cum Laude from Wellesley College with an award of distinction for acting, and had also been a champion equestrian. She began a family with her husband Barry later in life, and had finally found happiness with daughter Sophie-Marie (3/12/06) and then baby (Jack 8/30/08). Five weeks after his birth, the family escaped a wildfire in which all worldly possessions were lost. The family relocated in December of 2008 to Agua Dulce CA where they currently reside.

Jack began to have unsettling symptoms at the age of 3; he was taken to Children's Hospital Los Angeles and was diagnosed with DIPG, or diffuse intrinsic pontine glioma, on Friday Oct. 28, 2011, indisputably the darkest experience of Janet's life. The outrage of it made her determined to find the good in the situation, and she asked God to "Put me to work!" After Jack's death, she remained determined to start working to find solutions to DIPG and incorporated Jack's Angels at the end of 2012; the Foundation began its work in 2013. Despite the fact that DIPG is responsible for the majority of brain tumor deaths in children, she had been told there were no solutions for Jack because "the numbers aren't great enough for investors." This remains the primary motivation in her advocacy work, to prioritize children's lives in our medical system in the United States.