Childhood Cancer Talk Radio Podcasts

Because most all of our children die from DIPG,the intense suffering and grief has remained out of sight and out of mind of mainstream consciousness for decades. There is still insufficient awareness in Congress and in our society to the urgent, unmet needs of most children with cancer, and certainly brain cancer, a prevalent form of pediatric cancer, and the deadliest. Today's show features 3 chi...

Meet Anne Beatty from Prattville, Alabama. She retired in December 2019 after teaching for almost 24 years. Sadly, complications from a brain tumor--physical, and social--made retirement unavoidable. Her brain tumor journey began July 4, 2018; she had open heart surgery in February 2018 for a previously undetected congenital heart condition. On July 4th, she had a stroke due to a second undiagnose...

Marcelo Ortigao, associate professor of Preventive Medicine and Emerging Infectious Diseases at the Uniformed Services University (USU), and his wife Tanja Hess, large animal veterinarian and associate professor of equine sciences at Colorado State University Fort Collins, join us to share their family's recent and tragic loss, and resultant advocacy for pediatric brain cancer. Juliana passed away...

This is Part II of a special audio presentation of the DIPG Awareness Resolution Celebration and Tribute to DIPG Angels, formatted specially for Childhood Cancer Talk Radio. Today we honor the following four heroes for kids starting with the ongoing work of Kristen Gillette, with the Kortney Rose Foundation in Oceanside, NJ. An original and continuing supporter of the Children’s Brain Tumor Tissue...

The sibling perspective on childhood cancer is often the least recognized; our guest Rachna Prasad is an example of hope, inspiration, and dedication to a greater purpose. Her brother Mithil was afflicted with DIPG, the second most common and the deadliest pediatric brain cancer. As Vice President of the Mithil Prasad Foundation, and her work helping other cancer siblings with the Pediatric Brain...

The year 2020 marks an important breakthrough for childhood cancer awareness with DIPG, perhaps the deadliest pediatric brain cancer. To commemorate DIPG Awareness Day, May 17, 2020, Tammi Carr(Ann Arbor MI), Ana-Mari Carr (Miami FL), Ellyn Miller (Leesburg VA), Margie Akehurst (Broken Arrow, OK), and Denica Harden (Gresham, OR) share about their precious children who lost their lives to DIPG, a m...

The Gabriella Miller Kids First Research Act 2.0 was introduced in a bipartisan way on April 17, 2020. The original bill signed by President Obama in 2014 established a special fund and database with NIH for childhood genetic diseases and childhood cancers, an area of research which has been historically underfunded. Learn how you can support this crucial legislation which allocates funds in a mos...

Ana-Mari Carr (Miami, FL) and Bonnie Woodworth (Brandon, FL), an experienced advocate and legislative director of 1 Voice Foundation, join us to discuss their vocational work as advocates for children with cancer--notably DIPG and pediatric brain cancer. The Florida contingency of advocates with DIPG Advocacy Group this year helped to ensure that S. Res. 587, the National DIPG/Pediatric Brain Canc...

Lainey Titus Samant is the Director of Government Relations at the National Brain Tumor Society. Lainey oversees NBTS’s grassroots advocacy program that includes volunteer brain tumor advocates across the country and also works with the rest of the government relations team to monitor and influence legislation and appropriations that affect the brain tumor community. This year's NBTS "Head to the...

Grace Wethor is an 18-year-old actress, model, and author based in Los Angeles, CA. After being diagnosed with a brainstem glioma at age 13, and given an 8% chance of survival over 6 months, she moved to LA and started pursuing her dreams. Since then she has spoken about her diagnosis in a TED Talk and released her bestselling book titled "You're So Lucky". She is still fighting her tumor but trul...

A definite perspective emerges on what has become the Childhood Cancer Awareness Movement from one of its most influential advocates and supporters. Annette Leslie’s son, Carson Leslie, was afflicted with medullobastoma; before perishing to the disease, he wrote a book called “Carry Me” to give the benefit of his experience and what he learned to others who would come after him. After reading the...

Today's show features groundbreaking innovation for our medical research system to better accommodate the research needs for childhood cancer, inspired from the experiences of both of our guests who witnessed the urgent, unmet needs of children with brain cancer. Amanda Haddock's son David lost his life to glioblastoma. His fight inspired the beginnings of DragonMaster Foundation (KS), for which t...

Dr. Michael Prados (UCSF), lead scientist with PNOC (Pacific Pediatric Neuro-Oncology Consortium) and Dr. Adam Resnick (CHOP), leading scientist with the CBTTC (Children's Brain Tumor Tissue Consortium) share important developments in pediatric cancer research and also a potential shift in the way research is conducted, and funded, particularly with regard to a novel NIH/NCI SPORE grant. The field...

Kayla Giacin, Manager, Quality of Life Programs and Marketing for Children's Brain Tumor Foundation shares about upcoming events and current programs. Children's Brain Tumor Foundation's mission is to improve the treatment, quality of life and the long-term outlook for children and families affected by a brain or spinal cord tumor. During its 31-year history, CBTF has awarded over 75 research gran...

Anjalie Bartee was a normal, healthy junior in high school in Omaha, NE when she began experiencing headaches and vision changes. The condition persisted and worsened, and an ophthalmologist detected pressure on the brain and sent them to the ER at their local children's hospital. The diagnosis was a brain tumor, diffuse midline glioma (DMG); she was given a few months to a year, maybe two if luck...

Whether it's from a pediatric cancer or a freak accident, the loss of a child is perhaps the most devastating experience imaginable. Ernie Jackson, author of Quinton's Messages and Quinton's Legacy, lost his son Quinton to an accident and shares how he gained a constant and very real companion in faith. He shares this gift with others as a Board member and monthly columnist for the non-profit Help...

DIPG Advocacy Group co-founders Elizabeth Psar and Paul Miller join us to help give the background story to the group, how it formed and why; Also joining us is Lisa Ward, a new addition to the Admins of DIPG Advocacy Group, who’s son Jace Ward, a 20 year old pre-law student at Kansas State University, was recently diagnosed with DIPG. Their ongoing journey has been central to this group’s petitio...

"If we cannot add days to the life of a child, we will add life to their days," Suzanne Gwynn, nurse of 40 years, founder of LadyBug House. As a nonprofit, Ladybug House will offer intermittent stays to families who are caring for their children with life-threatening illnesses so they can have time for rest and quality time together. This care will be provided with no out of pocket cost to the fam...

Bryanna’s Love was founded in honor of Bryanna Kitchen, who was diagnosed with Early T-cell Precursor Acute Lymphoblastic Leukemia (ETP-ALL) only 3 weeks after her 9th birthday. One of the few things that gave her the strength to smile during this time was the many stuffed animals and the blanket she received, and of which stayed on her bed throughout treatment. It is through that experience, that...

Noah Berlow received his PhD in electrical engineering following undergraduate studies in electrical engineering, computer science, and mathematics. His graduate work grew into a long-term collaboration with Dr. Charles Keller, then at Oregon Health & Sciences University. Upon graduating, he joined the non-profit mission-based biotech start-up, the Children’s Cancer Therapy Development Institute a...

Goodbye Little Dude is the remarkable story about seven-year-old Jonathan, his classmates, and a pet turtle named Little Dude. While Jonathan is unable to care for his beloved turtle on his own, Little Dude thrives and grows under the tender care of Jonathan’s classmates. Together, they all learn that kindness, hope, and love are part of saying goodbye. The author, Rebecca Trotsky, gives us the ba...

Jill and Cam Morin join us once again to share the success of their recent event, the Goddard Cares Fall Fest 5K in Denver, raising over $20,000 for pediatric brain cancer research at Children's Hospital Colorado. On April 8, 2018, Luke’s family had received news that there was an inoperable and aggressive tumor in his brain called DIPG, diffuse intrinsic pontine glioma. After two radiation attemp...

Ricardo Garcia, CEO, Cesare Spadoni, COO, and Jonathan Agin, Head of Patient Advocacy for Oncoheroes Biosciences join us to discuss this relatively new biotech company, founded in 2017, and it's unique and thoughtful approach to childhood cancer research. The families of each of the three gentlemen have each been affected directly by childhood cancer and the lack of adequate treatments developed f...

"While we wait," declared Jace Ward from Wamego Kansas, to an NIH Symposium on genomic data sharing in September, 2019, "DIPG won't wait! It won’t wait to take my mobility, my sight, my speech and my life…" With an extraordinary opportunity to shine a light on one of the darkest realms of pediatric oncology, Jace Ward, a young law student of 20 years, backed by his family takes on the burden of ra...

Today's show features Nancy Goodman and Kids V Cancer, the notable leader in childhood cancer advocacy and legislation in the United States. Nancy wrote the Creating Hope Act of 2012, which has created over $1B in funding for pediatric cancer research in the private sector with the Pediatric Priority Review Voucher program. We discuss also the Race for Children Act of 2017. Nancy lost her son Jaco...