Advocacy, Research, and TNCI with Beth Anne Baber

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“Eight years ago, a 15 month-old little boy with platinum blond ringlets and bright blue eyes was diagnosed with high-risk neuroblastoma, a childhood cancer that results in around 255 deaths/year in the United States. Based on the size, location and maturity of his tumor, the toddler had less than 50% chance to live long enough to attend kindergarten… Unlike most parents of children newly diagnosed with cancer, these parents were armed with decades of knowledge and experience in working with very same drugs that their son would receive intravenously. They knew about genetic markers and how these markers could predict their son’s prognosis and response to these drugs. Even though the biopsy indicated the child’s cancer was extremely aggressive, a genetic marker suggested otherwise; today he is a 13 year-old with no evidence of disease…”

The Nicholas Conor Institute was founded out of the parents sheer frustration of knowing that existing technology and academic discoveries are not being further developed to save the lives of other children with cancer.   Beth Anne Baber, CEO, joins us to share her son’s story and to discuss this incessant and gnawing motivation for many parent-advocates:  Why are existing technology and academic discoveries not being further developed for our children, adolescents and young adults?  The answers are clear, and with increased activism and awareness of the realities so many children and their families are expected to endure, the solutions are visibly on the horizon for the childhood cancer community.

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