Portrait of a Mom: Quality of Life and Neuroblastoma, with Sarah Brewer

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Sarah Brewer knows the fear; through years of experience with her son Ben, diagnosed with Neuroblastoma at 2 years of age, her daughter Madeline just born, hers is a story of the most pervasive power of all:  love. Her family changed forever, but love and caring remain intact and reign supreme.

Hearing Sarah’s story of commitment and faith in the face of perilous uncertainty, for so long, is a testament to the preciousness of her son Ben in his brave fight, and to the importance of embracing the best in each moment–and insisting on it.
Sarahs blog documenting Ben’s awesome survival is at www.strongerthanilook.com, a must-read for parents of children with cancer.

The podcast can be found online at:  http://bit.ly/CCTR12-14-17.  (our podcast links are always case-sensitive)

You can listen to live TogiNet radio at www.TogiNet.com.  Childhood Cancer Talk Radio airs every Thursday at 4pm Eastern time, 1pm Pacific.

Taking it to the Hill: DIPG Advocacy Group promotes H.Res.69

December 5, 2017, Washington, D.C.–H.Res.69, the DIPG Awareness Resolution, is a simple House Resolution which raises awareness to the realities of diffuse intrinsic pontine glioma, perhaps the most deadly pediatric brain cancer.  It also raises awareness to general pediatric cancer and brain cancer statistics, the leading cause of death in…

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H.Res.69: Crucial Awareness Supports Greater Research from the Tragic Example of DIPG

Dr. Michelle Monje-Deissiroth of Stanford University and Dr. Adam Green of University of Colorado, Denver, join us to discuss the breadth of their research as pediatric neuro-oncologists, specifically regarding DIPG, diffuse intrinsic pontine glioma. They discuss how they were inspired to study this particular disease as a focal point for…

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Kids First 2.0 with Ellyn Miller

Ellyn Miller joins us to discuss the Gabriella Miller Kids First Research Act, originally signed into law by President Obama in 2014. The original bill ensured that a special fund was created at National Institutes of Health for research into pediatric disease, which historically receives inadequate funding for research. We’re…

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A Pioneering Journey, with Emma Wrenn

Emma Wrenn joins us to share her experience with her daughter Keira, who just passed away this last August as a result of her battle with DIPG, diffuse intrinsic pontine glioma. Keira’s case was public, and many of us around the world followed her story. Emma shares candidly what life…

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Real Solutions for Research Funding: NC3 Leads in Pennsylvania

Christopher Winters, President of NC3, the National Childhood Cancer Coalition, shares with us his work at the state level culminating 10/25 in the passage of HB46 in the Pennsylvania Legislature.  The bill creates the option for individuals to donate from their state income tax refund to pediatric cancer research.  In a…

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Outside the Box: Solutions for Kids with Target Pediatric AML

Julie Guillot and Dr. Soheil Meshinchi, an attending physician at Seattle Children’s Hospital treating children with high-risk leukemias, join us to discuss the innovative and exciting Target Pediatric AML program which promises genomic sequencing for targeted, effective treatment. Dr. Meshinchi oversees the world’s largest pediatric AML tissue repository, located at…

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Tamlin Hall’s Journey with BPDCN; Queensland, AUS

Kerrilee Hall and her 13 year old daughter Tamlin visit with us today from Queensland, Australia. Tamlin is at the 100 day mark post bone-marrow transplant or BMT for BPDCN treatment, or Blastic Plasmacytoid Dendritic Cell Neoplasm, a disease difficult to diagnose as it exhibits traits of leukemia and lymphoma,…

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“My Dog Named Hope” Comforts Children and Supports Research

The new children’s book “My Dog Named Hope” is about a special girl, her amazing dog, and a family’s journey through childhood cancer. The story was based on a compilation of the experiences of many childhood cancer families by the author, Joe Dean during his time working for the US…

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‘Champion of Change in Precision Medicine’ Amanda Haddock, President of DragonMaster Foundation

Amanda Haddock spent 11 years of her working career in the non-profit sector and 12 years working in the technology industry, a self-proclamed “serial volunteer” whose son, David, succumbed to GBM in 2012 at the age of 18.  The doctors and researchers they encountered on that journey led her to…

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