DIPG Reality and Research: Hopelessness and the Pathway to a Cure

Morally, rationally and in every sensible way, the experience of DIPG, diffuse intrinsic pontine glioma, inspires bereaved parents to fight for others and researchers to find a cure. Brain cancer is #1 in pediatric cancer incidence, and DIPG is the 2nd most common pediatric brain tumor.  It's also responsible for the majority of pediatric brain tumor deaths annually in the United States.  We visit first with DIPG parent Gerry Tye in Australia, who shares the impartial and devastating nature of the disease and all of its consequences, and how literally within days of his son being completely normal, he was given a few months to live. Talin survived only some few weeks past his diagnosis.

Dr. Noah Berlow of the Children's Cancer Therapy Development Institute brings us the perspective of a scientist to the disconnect between the profit-motivated medical research industry and the real-time data on a ruthless killer of children which doesn't generally qualify for investment. Ultimately, the hopelessness of DIPG inspires its affected communities, civilian and scientific, to reach for a cure for cancer. Awareness is the key to progress and research into causes and conditions, and the moral imperative to prioritize urgency of need. When a death sentence prevails in young children for over 50 years, the collective agony of loss becomes a compelling force for change.



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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.