Claim OwnershipChildhood Cancer Talk Radio Podcasts
Subscribed: 9Played: 268
Subscribe
© 2025 Toginet Radio
Description
Childhood Cancer Talk Radio promotes Awareness of this very real and prevalent affliction, providing a forum for conversation and advocacy in a growing community of affected families, de-mystification of the experience with personal stories, information and resources. Let us be your voice. We aim to help people connect and support one another, and be a voice for prioritizing our children in cancer research.
277 Episodes
Reverse
Today's interview features childhood brain cancer survivors Tori Moreno (DIPG) and Michael Keller (Astrocytoma G3), both having received treatment at the Burzynski Clinic in Houston, TX over 2 decades ago. As long-term survivors, they tell of their early memories and shared triumphs of enjoying, for all practical purposes, normal and healthy lives with a special fondness for "Dr. B", including Michael Keller's mom Christine who was helpful to detail their experiences as Michael was just a baby when diagnosed. A controversial doctor with a controversial therapy, Dr. Burzynski represents a sort of enigma of modern research science: a promising treatment with no development support, paired with the deadliest of diseases for our most vulnerable of citizens, childhood brain cancer. Dean and Wendy Fachon join us to further explain the kinds of obstacles with which a young person and their family are confronted when attempting to navigate a pathway to desired treatment amid very few options, as they did with their late son, Neil. Their recently published book of these long, arduous but light-filled adventures, "DIPG", can be found at www.dipgbook.com.
Tiffany Rose Curran shares her childhood cancer journey with us, of 2-time cancer survivor Keelie Grace Curran, her daughter who was first diagnosed at 3 years old with leukemia. Tiffany is an intuitive life coach with training in several energetic healing modalities, and is a graphic artist and also a singer/songwriter. She shares her personal journey with a rich storytelling gift and greatness of heart and hope that lifts the spirit. You can learn more about Tiffany's work at intuitivetiffanyrose.com.
Both Susan Lataille and Wendy Fachon have each endured the tragic loss of their sons and continue to demonstrate the dignity, love, and healing they have found through the shared process of writing. Both coming to us today from Rhode Island, Susan Lataille is a Certified Master Grief Coach who helps individuals who are grieving the loss of a loved one. It took her years to come to a place of acceptance of her own loss, diving head on into sharing her story and then helping others share theirs in her anthology series called “Shining a Light on Grief.” She has been able to guide others in writing their stories to feel lighter, find a new sense of peace and happiness, opening up to life's new possibilities. Wendy Fachon is the Host of Story Walking Radio Hour; she writes for the Natural Awakenings publication and is an environmental educator for the Empowerment Factory, among other outlets. She as been a participating author in the Shining a Light on Grief series and so brings her unique testimony to the effectiveness and power of that process to our audience.
Before devoting his efforts to advocacy for pediatric cancer research upon the diagnosis and loss of his daughter Juliana to DIPG, Marcelo Ortigao served as an associate professor of Preventive Medicine and Emerging Infectious Diseases at the Uniformed Services University (USU), in Bethesda, MD. He is now the Medical and Science Advisor to DIPG Advocacy Group, and also a supporter and advisor to the Marc Jr Foundation in Denver, CO. Dr Ortigao’s work has focused on the epidemiology and immune-biology of vector-borne diseases with specific interests on vector-pathogen-vertebrate host interactions, vector competence and innate immunity, ecology, distribution, and vector control methodologies. Rather than buying into the "rare" excuse for lack of solutions for pediatric diseases, he maintains unequivocally from his experience as a medical researcher that childhood cancers like DIPG (diffuse intrinsic pontine glioma) are neglected diseases, full stop. Today's podcast includes descriptions of certain government funding mechanisms now being more open to pediatric designation. His story has been impactfully presented by the Portrait Project: https://portraitproject.muralhealth.com/stories/marcelo-ortigao-part-ii
This historic event, truly a first for a focus on cancer prevention for children, takes place in Washington DC on October 25-26 of 2023. Jonathan Agin, Executive Director of Prep4Gold, Joe McDonough with the Andrew McDonough B+ Foundation and Simon Davies, Executive Director of Teen Cancer America share details of this highly anticipated event, which include a assembly of top experts in oncology and pediatric oncology from around the world, and Keynote Speaker Azra Raza from Columbia University, author of "The First Cell," and the human cost of pursuing cancer to the last. Topics of discussion include environmental exposures and childhood cancer risk, genetics and early detection, defining prevention and parental guilt, and preventing adverse outcomes and late effects. Registration is free for families and advocates.
Matthew Zachary is an American advocate and one of the health care industry's most respected, influential, and visionary voices with a 25+ year career in entertainment, advertising,
marketing, nonprofit, digital health, public policy, life sciences, and broadcast media. Also the founder and CEO of the non-profit, Stupid Cancer, and the young adult cancer movement, Matthew shares with us his personal story of discovering, enduring, and eventually beating cancer, and also his sought-after insight into the norms and conventions of the medical research investment culture, which Matthew helps cancer organizations and patients to navigate. Also co-founder of the documentary podcast studio OffScrip Health, Matthew hosts the popular podcast "Out of Patients, with Matthew Zachary," A Top-10 healthcare podcast.
Paul Miller, a dedicated advocate for children with cancer for the past 2 decades, joins us live for an unscripted conversation about childhood cancer advocacy, from the beginnings of his involvement to present day. Notable achievements range from MC-ing events for the Denver Chapter of St. Baldrick's Foundation for several years, to breaking records for blood and platelet donations to Children's Hospital Colorado, to his work with Jack's Angels Foundation towards the success of the National DIPG Awareness Resolution in the House and Senate, including trailblazing 2 Moonshot4Kids Congressional DIPG/Childhood Brain Cancer Briefings and Summits in Washington DC in 2020 and 2022; the impact of his contributions continue.
Childhood Cancer Talk Radio interviews Noah Berlow PhD, with Children's Cancer Therapy Development Institute from the perspective of dedicated researcher fighting the deadliest childhood cancer on the front lines. The second half features an interview with Gerry Tye, a DIPG Dad who trailblazed the DIPG Research Group on Facebook who shares the reality behind, and motivation for, this crucial research for all of oncology.
Phil Tan, pharmaceutical industry scientist from San Diego, shares the story of his son Xavier who was diagnosed with diffuse midline glioma (DMG), and the devastating effects of this diagnosis for the whole family. Brain cancer is the leading cause of cancer-related deaths in children in the United States while cures continue to elude this inadequately funded area of cancer research. Phil, Xavier and the rest of his family sacrificed precious time during their fight to keep him alive to provide a window of insight for the public, as the causes and conditions of childhood brain cancer remain a mystery. The Tan family resorted to alternative, lesser known therapies to create a more effective treatment program for him, while forging new pathways to accessing drugs like ONC201.
Both advocates and moms share the parallel of their personal experiences with their sons who were both diagnosed with DIPG, with Wendy's son Neil Fachon diagnosed at age 19 in 2016, and Janet's son Jack Demeter diagnosed in 2012. A continuation of a deep conversation from last week, the two share their hope and inspiration for continued advocacy as well as some of their hard-fought successes in the field. Despite the growing attention to the pediatric brain cancer research space, nothing has to date changed for the average family with a child diagnosed with DIPG from the experience 60 years ago. The two friends discuss what they have done to survive and thrive in a relative vacuum and an at-times fractured community, how hope is indispensable when fear runs rampant, and how brilliant scientists like Stalislaw Burzynkski (Houston, TX) and Michelle Monje (Palo Alto, CA) and innovative, collaborative organizations like Children's Brain Tumor Network (CBTN) and the Pacific Pediatric Neuro-Oncology Consortium (PNOC) give thousands an extended license to believe there will be a cure for DIPG.
Writer, host of Story Walking Radio Hour, and healthy environment and holistic solutions advocate Wendy Fachon joins host Janet Demeter in a real conversation about the experience of DIPG from the shocking diagnosis/prognosis of each of their sons to their touchstones of hope. For Brain Tumor Awareness Month, we learn about the inspirations for DIPG Awareness Day, and why advocacy is so important make the suffering of these children more visible, and a cure to come more quickly.
We were blessed to begin this show 7 years ago when the very first resolution for childhood brain cancer awareness was introduced into US Congress, the DIPG Awareness Resolution. Our second show featured an interview with Ellyn Miller, CEO of Smashing Walnuts Foundation in Leesburg, VA in honor of her daughter Gabriella who fought DIPG and perished in 2013, just 3 years prior at the time of the interview. You will hear how Gabriella's fight, her advocacy for other children, and her confrontational stance with Congress to take more action for our children led to the Gabriella Miller Kids First Research Act. Today, Ellyn continues her work with advocating for the Gabriella Miller Kids First Research Act 2.0, a new funding mechanism for the highly successful Kids First Program at NIH for childhood disease research. You can learn more about this crucial program for pediatric research at NIH.gov.
Today's interview features the amazing Tracy Ryan and the company NKORE Biotherapeutics which she founded with Dr. Anahid Jewett, mastermind of the new NK cell technology and immunotherapy. Tracy shares with us the story of her daughter Sophie who has endured cancer and its treatments since she was not yet a year old, with miraculous results with NKORE's therapies, and also the current challenges to the medical research investment culture for smaller companies, even with great promise like NKORE. Investors on a mission to find the cure for cancer? Look no further!! It's an honor and a pleasure to meet with this literal superwoman who presented her findings at the Moonsho4Kids Reception and Congressional Briefing a year ago in Washington DC on May 17, 2022, to an amazed group of lawmakers and foundation leaders.
We are privileged to give you the opportunity to visit with Dr. Kent Bugg and Leanna Headley to learn more or to reminisce about this extraordinary force in childhood cancer advocacy and dynamic young woman, Megan Bugg. The Megan Bugg Global Rhabdomyosarcoma Laboratory at cc-TDI's new location in Hillsboro OR, opens April 29th 2023, on the eve of the one year anniversary of her death. The event serves as a dedication of the laboratory at this precious moment for the Bugg family.
When Tracy & Josh Ryan’s daughter Sophie was diagnosed with a low-grade brain tumor at just 8 ½ months old, they knew they had to take action. Their wellness journey began when Tracy’s family was featured in the Ricki Lake produced Netflix documentary, Weed the People. This led the Ryans to become leading trailblazers in the use of cannabis for pediatric disease through their brand CannaKids, and their global advocacy efforts.
Through Tracy’s partnership with world-leading cancer research scientist in the field of Natural Killer Cells, Dr. Anahid Jewett, she helped drive groundbreaking research for Sophie, and in the use of cannabis for cancer.
We bring you this interview with Devan Tatlow once more just after the year anniversary of the terrible war waged upon Ukraine by its neighbor Russia, to bring attention to the work of Kids-of-Ukraine and the fundraising efforts to support them at this powerful moment. Through March 24, the event hosted by Jack's Angels and Charity Footprints brings attention to, and supports financially with event proceeds, the critical work of "Kids-of-Ukraine" and their work in rescuing children with cancer and their families in the war-torn country. Devan Tatlow gives us a precious window into the realities faced by children with cancer and their families, caregivers, and the challenges faced in the collaborative international effort to help the people of Ukraine.
Susan Lataille joins us today live to share her book series with the latest edition, Shining a Light on Grief, real women sharing real stories of love and loss, coming in April 2023. Susan has been producing professional events for the wellness industry in and around her community in Rhode Island for over 12 years. Since the passing of her son Nathan in 2017, she has been guided to help others through the grieving process, and in 2021, she was ready to take the step to become a Certified Master Grief Coach. She now assists others along their own grieving journey by offering love, compassion, and understanding, widening her reach with this book series and the powerful stories shared therein.
Today's show features an interview with Kathy Derr, Co-Founder and Director of Family Engagement for A Kid Again, a national organization with a mission to foster hope, happiness and healing for children with life-threatening health conditions and their families. The organization provides cost-free, consistent, year-round activities that create meaningful shared experiences and joy-filled memories. A Kid Again serves families in all 50 states, growing and enrolling families, and providing support resources and connections to help families cope with the challenges of raising children with difficult medical journeys. With more than 1.5 million children across the United States suffering from life-threatening conditions, A Kid Again is committed to reaching as many of these impacted families as possible.
Replay of the December 15 interview as we prepared the Charity Footprints fundraiser to begin 2/24/2023 to support Kids-of-Ukraine's critical work helping children with cancer and their families in our war-torn sister country. Tabletochki, the Ukrainian charity which helps children with life-threatening diseases in Ukraine and in surrounding countries, had begun building a state of the art children's oncology hospital before the war began, and its work has been put on hold. How much catch up will need to be done with reconstruction, we simply cannot know at this time.
From contented stone mason living the dream with his family in beautiful Montana, to scientific investigator at the leading US biotech institute for childhood cancer research, here is an amazing story! Today's show brings to you the complete interview with Andy Woods, Chief Mission Officer with Children's Cancer Therapy Development Institute in the outlying western suburbs of Portland Oregon. Andy gives us generous insight into family life before a life threatening diagnosis for his daughter, and how this event triggered a career transition which was nothing short of divinely guided, as Andy's early contributions to the institute literally enabled the advent of an effective therapy for her disease where there had been none before. The family story portion of this interview was included with the 11-24-2022 Thanksgiving show, along with an interview with Dr. Charles Keller, founder of the Institute.
Comments
Download from Google Play
Download from App Store
United States