This edition of Childhood Cancer Talk Radio gives a personal look at the landscape of childhood cancer advocacy over recent years, between parents of children afflicted with brain cancer. 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.
podcast download: http://bit.ly/CCTR2-25-21