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Welcome to Childhood Cancer Talk Radio powered by Jack's Angels Foundation where we talk about real experiences, advocacy news, developments in research, and today's heroes for kids!

For guest and promotional information, download our "Prospective Guest Letter."

Our primary purpose is to provide a powerful voice of hope in the advocacy/activist movement for our children with cancer, and to encourage more conversation in the world at large about prioritizing our children afflicted with cancer in our medical research system. Currently, very little of our government budget for cancer research benefits pediatric cancer directly, while cancer is the leading cause of disease-related death in children in the United States. The system is driven primarily for short-term investment profits rather than the long-term gains in creating new industry and jobs that scientific breakthroughs, and in this case a cure, would typically bring. 

We focus on what actions are being taken currently, by parents, advocates and activists, and our representative voices in Government on the behalf of children to prioritize them in our system. Our workers in the science and tech world devoted to helping create a more responsive system are welcome to share their news and innovations to greater public awareness and application. And of course, we invite our scientists on the front lines of research and clinical work to share their developments, new directions, and hope.

We work for the day when no parent hears there's no solution for their child because, "the numbers aren't great enough for investors."

 

Angie and Steven Giallourakis and the Steven G. AYA Cancer Research Fund

Two-time cancer survivor Steven Giallourakis joins us with his mother Angie to share their experience which inspired the Steven G. AYA Cancer Research Fund in Avon Lake, Ohio. Angie Giallourakis is President of the organization which has programs in wellness, education, research and advocacy for young people with cancer.

"AYA" is an anacronym for "Adolescents-Young Adults", a patient population faced with unique challenges including inadequate research funding, poor prognosis rates, and lingering medical issues for survivors.

Angie's work has developed strongly into an exploration of healing and holistic living and wellness practices for patients and their families, while Steven and his advocacy for young people with cancer remains the inspiration and driving force of their organization.  Steven lives with the same challenges facing many other survivors; his experience speaks to the importance of the STAR Act and other similar pieces of legislation needing greater public awareness and support in Congress.   Candidly, Steven shares with us some of his own personal experiences with loss which inspire him on a daily basis to fight for other young people with cancer.

 

 

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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 Senate; the book was illustrated by Lauren Curwick.  Joe was a business executive as well as an executive US Senate staffer and founded the Stars and Stripes Honor Flights for Veterans of War.   Joe joins us to discuss why he is so passionate about children with cancer and why he decided to write this book, the proceeds from which benefit pediatric cancer research and support. 

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Annette and the Carson Leslie Foundation Host the Golden Toast

Annette Leslie is a mom who has been through the harrowing experience of losing her son to medulloblastoma in 2010. His extraordinary life and character inspired the Carson Leslie Foundation's inception that same year, in Dallas Texas, and launched her into a world of advocacy for children with cancer, pediatric cancer research, and working closely with legislators to promote the prioritization of pediatric research funding in a culture that is profit motivated and often neglectful of those most needy of a cure.

Annette spoke at the 2010 Inaugural Summit for the Congressional Caucus for Childhood Cancer co-chaired by her Congressman, Michael McCaul, and in 2014 she began hosting the tradition of the Golden Toast to honor those key Congressional leaders responsible for supporting the continuing evolution of the childhood cancer awareness movement into laws that ensure that the leading disease-related cause of death in children in the United States will receive adequate research funding, and affected children will receive adequate care and support.

The Carson Leslie Foundation is dedicated to collaborative research for pediatric brain cancer and supporting children and the quality of life that they enjoy with their families with special events and programs.  Annette looks forward with us to the 8th Annual Summit for Childhood Cancer with the Childhood Cancer Caucus and the Golden Toast which celebrates our greatest heroes for kids in Congress, on Thursday, September 14th at 9am in the Rayburn House Office Building on Capitol Hill.  Those interested in any way in childhood cancer awareness in the Washington DC metropolitan area are warmly encouraged to attend.  For more information about the summit, visit www.childhoodcancer-mccaul.house.gov.  Discover the latest triumphs of the Carson Leslie Foundation and their work with CPRIT, the Cancer Prevention and Research Institute of Texas, shared in this podcast, at www.carsonlesliefoundation.org.

Carson Leslie's book "Carry Me" was published 6 days before his death in 2010, and it continues to supply unique inspiration and unparalleled support to children with cancer and their families.  It can be found on the foundation website

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The Triumph of Team Ellie

Ellie Waters was diagnosed with alveolar rhabdomyosarcoma at the age of 14 and endured the heavy-duty treatments that this frightening disease necessitates, and is now at 16 a vibrant, bigger than life personality devoted to helping other children and teens with cancer. She comes to us from Northamptonshire in the UK with her twin sister Olivia and mother Sam Waters, each contributing to this story of love,certainty of faith in the face of difficulty, powerful support and advocacy for others. "Stronger together" is a motto of Team Ellie, and you can find Ellie's helpful blogs and videos for teens on Facebook's TeamEllieBlog, and Youtube channel Team Ellie. 

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Nicole Vathy and "Baby" Shawn face DIPG with the Golden Niagara Falls of September

Nicole Vathy, single mom of seven, shares her journey with her youngest, Shawn, who has been diagnosed with diffuse intrinsic pontine glioma.  Shawn is one of the few who survive past the year mark to two years with a stable tumor.  Nicole candidly shares with us this very difficult road with humor, horse sense, and a mother's love.  Go for the Goal and Punt organizations are local childhood cancer groups benefiting from the Golden Steps 4 Pediatric Cancer led by Baby Shawn at Niagara Falls, a precedent setting event "going gold" for children with cancer all over the world.

 

 

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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.


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