Childhood Cancer Talk Radio Podcasts

The Gabriella Miller Kids First Research Act, first signed into law in 2014, is perhaps one of the most important pieces of legislation, and resulting research and data-resource programs for pediatric disease, to date. It begins to fill the void left by the industry of medical research and its biggest players: pharmaceutical companies, the larger cancer charities and research investors, and the NIH, when it comes to pediatric disease.

All childhood cancers are considered rare with that label are immediately placed on a sort of indefinite hold of irrelevance. This new pediatric research and data-resource program at the NIH is the game changer for children who face deadly disease and an uncertain future.

Ellyn Miller, mother of Gabriella who was diagnosed with DIPG--diffuse intrinsic pontine glioma--at the tender age of 9 and who died almost a year later in 2013, joins us to discuss developments in this program, it's Kids First 2.0 continuation, and Gabriella's legacy of strong advocacy for children with cancer and for the most relevant and transformative scientific 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 reveals itself to be as mysterious and ephemeral in it's signature as the variances of individual fingerprints...and represents the frontier of our understanding of cancer, and the brain.  It's also a ruthless killer of our children, and as the 2nd most common pediatric brain tumor, the only thing rare about it is the long-term survivor.

In H.Res.69, DIPG acts as an ambassador for childhood cancer and the experiences that childhood cancer families endure when "the numbers aren't great enough for investors."  It makes a strong case for urgency of need, and years of life lost, being a greater factors for research grant consideration.

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 still with us at 3 years! The joy of this life is overshadowed by the reality of DIPG. Less than one percent survive past 5 years, and when the tumor activates once more, it's growth is swift and merciless. It is a constant shadow of fear for the family.

And then, imagine your integrity being questioned, the validity of your child's condition when to an uninformed onlooker, the disease is not noticeable. Imagine having your reputation dragged through the mud amid extreme financial difficulty and the rejection of community.

Natalie's father tells it like it is; look for "Natalie's Road Trip" fundraiser on our Facebook page in coming days to support quality time for this struggling family, through Jack's Angels Foundation.

We get a first-hand look inside the controversial treatment program in Monterrey, Mexico, to which many DIPG families flock with the kind of determination that only an utter lack of solutions and hope can inspire. Kimberly Beauchamp, through an introduction close to the heart with her niece Kiera, discovered this oasis of fellowship and hope in 2015. To this day, the founder of "Making DIPG History", a Facebook page chronicling cases of families in the DIPG community who followed this path while supplying an online community of fellowship, remains faithful to the quest for a cure and a world in which one can find hope.

What is it like when there is literally nothing they can do, when your child is ok one day, but after the next might never walk again? Jodi Jacobs tells it like it is for DIPG families, discussing what happened to her 7 year old daughter, Cheyanne.  DIPG, often labeled a very rare brain cancer, is revealed to be the 2nd most common pediatric brain tumor, and responsible for the majority of brain cancer deaths in children each year.

Follow her fresh journey into activism for all kids with cancer and their families--that our children, our future, might hold higher value in the medical research system today, and more importantly, tomorrow. Every child's life deserves hope.

Molly Lindquist, CEO of Children's Cancer Therapy Development Institute in Beaverton OR, joins us to share her personal story of cancer survival and the importance of the parent-funded research at cc-TDI. We continue exploring the research Project Haystack for rhabdomyosarcoma, and hear from two more foundations helping to fund this project, first Vanessa Lendvay with Team Naomi, from Saskatoon Saskatchewan, Canada. Team Naomi began in the family living room between Vanessa, a pharmacist, and her husband, a teacher. Their daughter Naomi was stronger than her cancer, and to be told that the cancer was stronger than the science currently fighting it was unacceptable to them. The option to do nothing wasn't either, and so "Team Naomi Get Well Now" was formed, donating over $188,000 in its first 2 years to rhabdomyosarcoma research.

Finally, Larry Perfetti joins us from Highland Park NJ and shares the legacy of his daughter Kirsten, Kier’s Kids, which provides support for children, young adults and their families directly while helping to find cures for rhabdomyosarcoma and other pediatric cancers.

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, together.  The organization is dedicated to inspiring today’s youth and engaging their creativity through education about the realities of childhood cancer and the challenges to adequate treatment, support, and funding for pediatric research. 

Truly, With Purpose is, in its public engagement, is part of the solution to the general lack of research funding for pediatrics in our medical research system today, especially for cancer, the leading disease-related cause of childhood deaths in the United States.  Featured are Catherine Thibault, and twins Nicole and Rachel Olson, who have exhibited outstanding leadership in event organizing and fundraising totally over $40,000 to date in just the last 3 years.

Launched in 2015, the direction of With Purpose was shaped by the young people who spontaneously took up the cause of creating a world where kids with cancer have access to safe and effective treatments.  Catherine, Nicole and Rachel have led the way as new young people are featured each month for taking action in their communities to help affect change for their peers with cancer.  For more information about With Purpose, please visit www.with-purpose.org.

Dr. Charles Keller, Scientific Director of the Children's Cancer Therapy Development Institute, describes for us in opening the show, the ongoing work at the Institute funded by parent-led foundations in its quest to make all forms of childhood cancer survivable, specifically Project Haystack, an international collaboration in rhabdomyosarcoma research. 

In partnership with 10 family communities around the world, the Children's Cancer Therapy Development Institute is embarking on a drug discovery project for rhabdomyosarcoma through an academic-pharma partnership with a major Swiss pharmaceutical company; 640,000-compounds have been screened across a range of cells-of-origin and mutational profiles for primary tumor cell cultures taken from murine sarcomas.  Four of the most potent hits share near-identical chemical structures.

All compounds have cell growth inhibition activity against alveolar RMS (ARMS) and embryonal RMS (ERMS), only mixed activity against UPS, but no activity against normal fibroblasts.

One of these compound hits is an FDA-approved cardiovascular medicine with a favorable long-term side effect profile, and completely unstudied with respect to rhabdomyosarcoma.

Ian Marci joins us from the Fight Like Mason Foundation, and Laura Roberts with the Elaine Roberts Foundation to share their experience, involvement in the research, and inspiration to keep working for a cure.

Luna Zin joins us from her Utah home to discuss her first book, "The Heart of Luminous", inspired by her research in the childhood cancer community, and by a special little boy in particular who lost his life to brain cancer. Luna takes us on a personal journey of discovery and inspiration as a writer and advocate for children with cancer which continues today, as "Luminous" is but the first story in a volume of many more to come. The book takes the themes of life and death, good vs. evil, magic and creativity to an evolved vision where life's story never ends, but changes. The reader is drawn along by one's own curiosity to learn more, explore more deeply what all of these concepts mean as life continues to unfold.

Ellie Waters visits with us from the UK to give us an update on her progress, cancer-free, and also gives a clear picture of the realities of teen life, having survived cancer.

Team Ellie's blog is prolific and her helpful influence on other children and teens is significant. Ellie speaks out about bullying, yes even as a cancer patient, and shares her experience, strength, and smarts with others.