Life Beyond DIPG: Inspiration and Avocation

In this edition of Childhood Cancer Talk Radio, members of the DIPG Advocacy Group Gerry Tye (Syndey, AUS), Katherine Bader (Rhineland, Missouri) and Marcelo Ortigao (Fort Collins, CO) share their personal experiences with DIPG, one of the more common types of childhood brain cancer, and the deadliest with very few survivors.  DIPG Advocacy Group is a coalition of childhood brain cancer organizations and individual childhood cancer advocates which initially formed to support the DIPG Awareness Resolution in US Congress, and continues as an international group as the impact of awareness affects research, education, and accessibility to clinical trials.

Gerry Tye leads a prominent Facebook group for DIPG research providing solid and trusted information on the latest scientific papers and clinical trial options.  His son Talin died of DIPG in 2012 and the experience changed his life inalterably and has inspired this tireless work.  Marcelo Ortigao, a researcher himself and an associate professor of Preventive Medicine and Emerging Infectious Diseases at the Uniformed Services University (USU), in Bethesda, MD details a white paper he has written addressing the challenges to the current clinical trials systems in adequately supporting children with brain cancer. 

And finally, Katherine Bader,  a philanthropist in her community and founder of "The Soup Kitchen" serving the local poor, was forever changed by the loss of a 6 year old girl she was sponsoring throughout her decline from DIPG, dying 2 years ago.  The experience moved her to be involved with the advocacy group with her own "DIPG Map" of children, and then expanding this effort to include all children with cancer, specifically for Smashing Walnuts Foundation.  Her contributions continue as her work benefits several childhood brain cancer networks.

Brain tumors lead in childhood cancer incidence, and deaths.  We constantly repeat these facts as they are not widely known.  In the USA where we pride ourselves in our family values and top notch medical care, these children and their families fall by the wayside; parents are left to fight for those yet to be diagnosed for awareness of an unseen, unheard population for which treatments and prognosis have not improved since Neil Armstrong's daughter was tragically afflicted with DIPG and perished in 1962.

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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.