A Look Back, and Forward: Advocacy with Children's Cancer Cause 2021

Today's show is a recap of recent advances in childhood cancer advocacy and reiterates the basic facts about childhood cancer for which we strive to provide a worldwide platform for awareness at Childhood Cancer Talk Radio. 

As co-founder of DIPG Advocacy Group, host Janet Demeter is in a unique position to share the latests developments for childhood brain cancer advocacy and a new introduction of the National DIPG Awareness Resolution.  At half-time we are privileged to bring you some excerpts from a recent webinar with the Children's Cancer Cause with Sue Emmer, Policy Counsel, detailing the three most important points of focus for advocacy for children with cancer as we move forward into 2021:  community collaboration, pediatric drug discovery and development, and support for childhood cancer survivors.

Children's Cancer Cause is the leading national advocacy organization working to achieve access to less toxic and more effective pediatric cancer therapies; to expand resources for research and specialized care; and to address the unique needs and challenges of childhood cancer survivors and their families.

Children's Cancer Cause, founded in 1999 as The Children's Cause, Inc., was established to take a leadership role in advocacy and training on national issues affecting childhood cancer.

Children's Cancer Cause leads efforts to ensure that these needs and perspectives of children with cancer are integrated into the highest deliberations on health care and cancer policy at the Federal level.  Please visit their website at www.childrenscancercause.org to learn more.

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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.