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."

This edition of Childhood Cancer Talk Radio gives a personal look at the landscape of childhood cancer advocacy over recent years.  For this, I have the honor of sharing conversation and perspective with fellow advocate Jonathan Agin, whose participation in the childhood cancer community spans this past decade and beyond; the great legislative advances made, the grassroots development of resources for families, and the wealth of leadership grown from tragedy in the childhood cancer advocacy community have all played key roles.  From this perspective, we take a look at the actual progress made for our children who become diagnosed with various cancers, the still deadly and lesser-known yet largely prevalent subtype of childhood brain cancer, with a hopeful look toward the near future as the need for greater research into causes and conditions begins to get more attention with the Childhood Cancer Prevention Initiative. 

Jonathan Agin brings significant legal, biotech, corporate management and parental experience to the field of advocacy. Having spent over 20 years in the practice of law, 16 of which were as a full time litigator in Washington, DC and Maryland, he transitioned from legal practice and the law firm that he co-founded following the loss of his daughter Alexis to pediatric brain cancer (DIPG) in January 2011.  In 2014 he co-founded a non-profit biotech in Beaverton, OR, the Children's Cancer Therapy Development Institute, where he was the general counsel, institutional official and development liaison. In addition, from September 2015 through 2020, he was Executive Director of the Max Cure Foundation, was recently elected to sit on the NCI Brain Malignancy Steering Committee assessing paediatric and adult clinical trials; he was an original founding member of the DIPG Collaborative, sits as an editor and contributor for the Canadian Oncology journal Cancer Knowledge Network, and is a frequent contributor to the Huffington Post writing about childhood cancer.

Most recently, In January 2021 Jonathan formed PREP4Gold (Preparation, Research, Education and Programs for Childhood Cancer--formerly Connor Cures) and serves as Executive Director.

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.

In this edition of Childhood Cancer Talk Radio, members of the DIPG Advocacy Group Gerry Tye (Syndey, AUS), Katherine Bader (Rhineland, Missouri) and Marcelo Ortigao (Fort Collins, CO) share their personal experiences with DIPG, one of the more common types of childhood brain cancer, and the deadliest with very few survivors.  DIPG Advocacy Group is a coalition of childhood brain cancer organizations and individual childhood cancer advocates which initially formed to support the DIPG Awareness Resolution in US Congress, and continues as an international group as the impact of awareness affects research, education, and accessibility to clinical trials.

Gerry Tye leads a prominent Facebook group for DIPG research providing solid and trusted information on the latest scientific papers and clinical trial options.  His son Talin died of DIPG in 2012 and the experience changed his life inalterably and has inspired this tireless work.  Marcelo Ortigao, a researcher himself and an associate professor of Preventive Medicine and Emerging Infectious Diseases at the Uniformed Services University (USU), in Bethesda, MD details a white paper he has written addressing the challenges to the current clinical trials systems in adequately supporting children with brain cancer. 

And finally, Katherine Bader,  a philanthropist in her community and founder of "The Soup Kitchen" serving the local poor, was forever changed by the loss of a 6 year old girl she was sponsoring throughout her decline from DIPG, dying 2 years ago.  The experience moved her to be involved with the advocacy group with her own "DIPG Map" of children, and then expanding this effort to include all children with cancer, specifically for Smashing Walnuts Foundation.  Her contributions continue as her work benefits several childhood brain cancer networks.

Brain tumors lead in childhood cancer incidence, and deaths.  We constantly repeat these facts as they are not widely known.  In the USA where we pride ourselves in our family values and top notch medical care, these children and their families fall by the wayside; parents are left to fight for those yet to be diagnosed for awareness of an unseen, unheard population for which treatments and prognosis have not improved since Neil Armstrong's daughter was tragically afflicted with DIPG and perished in 1962.

A Class of 2020 graduate from UCLA in anthropology, Rachna Prasad is a working on a Masters program in clinical research at the University of Zurich, living her dream and honoring the legacy of her brother Mithil, who lost his life to brain cancer. She also manages the Mithil Prasad Foundation based in San Jose where she is from, and is developing a podcast called "Hear The Rare", devoted to exploring the science and treatment of childhood brain tumors.

Present and partner to the beginning of "Hear the Rare" was Jace Ward, from Wamego KS, who joins us for the second half of the show; Jace is involved in an experimental protocol for DIPG that is projected to accept only 6 patients in its first year of operation. On this day, Nov. 5 Oncoceutics Inc. released an official statement regarding an exciting new trial for ONC201, a drug which helped Jace live with DIPG long enough to get on the experimental Carr T-Cell treatment he has just received, with which he is faring well. Jace and his family, notably his mother Lisa Ward, have accelerated the actions of advocacy in the space of pediatric neuro-oncology with their commitment to bring people and resources together to find a cure.

Marti Jaenke Dexter tells the story of her youngest daughter of four children, Juliette, described sweetly as her “gift from God.”  She was born on July 9, 2003 with two rare genetic conditions, Pierre Robin Syndrome and Mobius Syndrome.  Though one required surgery as an infant, Juliette had a  happy, healthy childhood and social life.  She was diagnosed in 2014 with Myelodysplastic Syndrome (MDS)with a very high probability of developing leukemia; the discovery of bone marrow fibrosis was tragically not in her favor for treatment.  The family did not give up hope and went through a Cord Blood Transplant which unfortunately failed.  Her second transplant that December resulted in GVHD to which she ultimately succumbed.  

Juliette left a legacy of healing and hope with her family which you may follow at "Juliette's Journey of Healing and Hope," on Facebook.  Marti plans to publish a journal book for children inspired by this journey, a tangible gift of their forever bond.  Our advocacy segment focuses on H.R.6556, legislation that supports the NIH Kids First Research Database, a crucial source of information and clues for the medical community of rare genetic pediatric disease and pediatric cancer.