Jackson is a boy from Colorado fighting a devastating foe: DSRCT. Desmoplastic Small Round Cell Tumor (sarcoma) is a frequently misdiagnosed, rare pediatric cancer with only 200 known cases in the United States, and a poor prognosis. His father, Jason Frank, candidly discusses the monumental challenges confronting his family, and…

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Why DIPG? The One to Beat from Awareness to Research

DIPG is front and center with researchers, devastated by the picture painted by the statistics of this killer of very young children, and with advocates who have been working for years to get a greater national conversation about the chronic lack of research funding for the deadliest pediatric cancers. DIPG…

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What If Your Child Lives When Expected to Die?

No matter how much time one may have with a child diagnosed with terminal cancer, the stresses of life can be extreme. Natalie Avila was diagnosed with DIPG, a common yet deadly pediatric brain cancer just before her third birthday. She was given 3-6 months to live, yet she is…

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With-Purpose Foundation: Kid-Power in Awareness and Fundraising

The charitable organization With Purpose, in Minneapolis MN, was founded by Erin Benson in loving memory and trust of her son Sam Lee who perished to brain cancer at a very young age, and who exhibited exceptional clarity and faith in our ability to create and enjoy our own happiness,…

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Tamlin Hall (AUS) Beating BPDCN, and her Blog at BraveryBox

Tamlin Hall and her mum Kerrilee visit with us to share Tamlin’s story of surviving BPDCN, and the new network of hope and support that has grown from their experience with this rare but deadly disease. Tamlin’s writing, at 14, shows subtlety and power beyond her years, but more importantly…

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“Lighten Our Darkness”: Two Moms Advocate for Others from Life’s Most Tragic Loss

Kirsten Finley and Jamie Franzini, both coincidentally from the same Congressional District in Florida–that of Rep. DeSantis (R-FL-6)–discuss their recent and tragic losses and resulting action in advocacy for children with cancer to inspire greater awareness for the perilous situation so many families find themselves in every day in the…

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DIPG Awareness Day—A National Movement

I’m re-posting this as, for some reason, the blog page isn’t allowing access to posts other than the one page…sorry, I’m not a tech genius and I don’t have a volunteer working on organizing our site. Original date was July 24, 2017. (H.Res.69 asks for a date henceforth, not just…

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Congressman Knight Champions Awareness Legislation for Children with Cancer

January 30, 2018, Santa Clarita, CA–One year ago today, Congressman Steve Knight (R-CA-25) introduced with Congresswoman Jackie Speier (D-CA-14) H.Res.69, the National DIPG Awareness Resolution to the House Energy and Commerce Committee.  The Resolution persists today, amid an intensive political landscape in 2018, for children with the deadliest pediatric brain…

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Congressman Knight Champions Awareness Legislation for Forgotten Children

January 23, 2018, Santa Clarita, CA–Amid an intensive political landscape in 2018 persists an National Awareness Resolution, H.Res.69, for children with the deadliest pediatric brain cancer, DIPG:  diffuse intrinsic pontine glioma.  Not only does the bill call for an Awareness Day for these children and their families, May 17, it…

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

click to download podcast

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.