Childhood Cancer Talk Radio Podcasts

Stacie Sayler of Walla Walla Washington tells the story of a happy family of 5 on a small farm, Eric Sayler the father is a pastor, mom home-schools her children. One day everything changed when Stacie noticed her daughter's eye was not tracking properly. Julianna was diagnosed shortly thereafter with a deadly brain cancer of which the family had never heard, and they were told to just go home and...

Kirsten Finley and Jamie Franzini, both coincidentally from the same Congressional District in Florida--that of Rep. DeSantis (R-FL-6)--discuss their recent and tragic losses and resulting action in advocacy for children with cancer to inspire greater awareness for the perilous situation so many families find themselves in every day in the United States. Brain cancer is the leading cause of death...

Ginny McLean, Communications and Outreach Director for Swifty Foundation joins us to discuss the Hike 4 Pennies program with hiker Erick Montgomery who has taken on the challenge of the Pacific Crest Trail, from Tijuana, Mexico to the Canadian border to raise funds for urgently needed pediatric brain cancer research. The program joins social media with the real-time hiking experience in the wild,...

Both parents Dean and Wendy Fachon join us to share the story of their son Neil Fachon's diagnosis of DIPG, one of the deadliest pediatric brain cancers. Their journey included the hope of an experimental treatment at the Burzynski Clinic near Houston, TX, and what it was like to endure an FDA interruption of treatment. Neil's bright and shining personality has been a huge loss to both the family...

What would you do if your doctors provided no solutions for your child? When nowhere in your country was hope for survival inferred by treatment? Melany Knott tells us about her daughter Kaisey who is currently 17 months out of a diagnosis of DIPG, for which the median survival time is 9 months. Kaisey, although diagnosed with a terminal brain cancer, has hope for longer survival today because of...

Melissa Castango joins us to share the story of her daughter Zoe, diagnosis with brain cancer and the beginnings of her journey with Zoe's Butterfly Foundation in Milford, CT. The realities of a terminal diagnosis for the family including changes in friendships, family structure, and the desire to honor and preserve the memory of her daughter are an ongoing journey of discovery and determination t...

Heroes and Angels in Little Rock, AR is the real deal: a small, grassroots organization doing everything humanly and angelically possible to support children with cancer by helping local families, raising awareness to the urgent need for greater pediatric research funding, and with Ken's amazing bike rides for kids. He's ridden over 270,000 miles so far, and is gearing up for the big 10,000 miler...

Jim Churchman joins us to share the story of the Smile High Club, a non-profit organization dedicated to putting smiles on faces and hope in the hearts of children facing illness or any physical challenge. A stuntman for many years, Jim Churchman is a 2nd Unit Director and Stunt Coordinator with over 100 film and television credits, and his "give back" to the community is to create this fantastic...

Nurse and family confidante Nick Maroulis, and brother of Theodore Vasilis Ntoumas join us to discuss Batten disease and the effects of fatal, rare, pediatric disease on the family and in a country where support is so difficult to instate. Nick comes to us from Greece, while we speak with Vasilis who now lives and works in London. Theodore is a living miracle, still active in his life and a source...

Paul Melmeyer, Director of Federal Policy for NORD, the National Organization for Rare Disorders,joins us to discuss NORD's advocacy activities at the local, State, and federal level. The pioneering organization in support of all patients with rare diseases first introduced the Orphan Disease Act in 1983, the year of its founding, and made those with rare disease a force in the world, and a voice...

Gerry Tye joins us from Sydney Australia to discuss the changes in the childhood cancer community over the past six years. A father of three boys, Gerry's middle child Talin (age 5) was diagnosed with brain cancer in 2012, passing away shortly thereafter. Beginning in relative obscurity, Gerry's advocacy for other families and their children with cancer evolved into leadership in several advocacy...

A long-time advocate for children with cancer, Paul Miller of Littleton, CO shares with us his story of advocacy through fundraising events, routinely donating blood, supporting groups, connecting people, and how these activities have finally evolved into a bid for his State Legislature. Catalytic to this quantum leap was interacting with lawmakers on Capitol Hill, their staff, and the challenge o...

Ann Graham, CEO of MIB Agents--Make-It-Better-Agents--and osteosarcoma survivor, joins us to discuss the great strides in improving outcomes for osteosarcoma patients which her organization accomplishes as they move forward. The FACTOR Conference began last year in 2017 and was enormously successful in bringing top oncologists, clinicians, patient families and advocates together to improve researc...

Shane and Shawnee Doherty discuss frankly their experience with their son Hollis who was diagnosed with DIPG in March of 2016. DIPG, diffuse intrinsic pontine glioma, is for all practical consideration a death sentence. The Doherty family showed an extraordinary solidarity out of the gate to endure the experience in the hope of making the most possible wonderful days for their son, and choosing tr...

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 fa...

Sarah Brewer knows the fear; through years of experience with her son Ben, diagnosed with Neuroblastoma at 2 years of age, her daughter Madeline just born, hers is a story of the most pervasive power of all: love. Her family changed forever, but love and caring remain intact and reign supreme. Hearing Sarah's story of commitment and faith in the face of perilous uncertainty, for so long, is a test...

Dr. Michelle Monje Deissiroth of Stanford University and Dr. Adam Green of University of Colorado, Denver, join us to discuss the breadth of their research as pediatric neuro-oncologists, specifically regarding DIPG, diffuse intrinsic pontine glioma. They discuss how they were inspired to study this particular disease as a focal point for much of their research, and the general state of the resear...

Emmy award-winning journalist Jay Korff of WJLA Washington DC joins us to talk about his new documentary film just released, Endure, featuring "Tattoo Tom" Mitchell and his crew taking on the challenge of the Tahoe 200 ultra-distance trail race in support of childhood cancer awareness. The runners' odyssey is punctuated by the personal stories of several childhood cancer victims and their families...

Ellyn Miller joins us to discuss the Gabriella Miller Kids First Research Act, originally signed into law by President Obama in 2014. The original bill ensured that a special fund was created at National Institutes of Health for research into pediatric disease, which historically receives inadequate funding for research. We're fortunate to hear about her daughter Gabriella, whos fight with brain c...

Emma Wrenn joins us to share her experience with her daughter Keira, who just passed away this last August as a result of her battle with DIPG, diffuse intrinsic pontine glioma. Keira's case was public, and many of us around the world followed her story. Emma shares candidly what life is like now, what remain to be the greatest challenges to the DIPG experience, and the hope that her daughter's li...

Christopher Winters, President of NC3, the National Childhood Cancer Coalition, shares with us his work at the level of State Legislature culminating 10/25 in the passage of HB46 in the Pennsylvania Legislature. The bill creates the option for individuals to donate from their state income tax refund to pediatric cancer research. In a less than ideal political climate, change is slow going for rais...

Julie Gillot and Dr. Soheil Meshinchi, an attending physician at Seattle Children’s Hospital treating children with high-risk leukemias, join us to discuss the innovative and exciting Target Pediatric AML program which promises genomic sequencing for targeted, effective treatment. Dr. Meshinchi oversees the world’s largest pediatric AML tissue repository, located at Seattle’s Fred Hutchinson Cance...

Kerrilee Hall and her 13 year old daughter Tamlin visit with us today from Queensland, Australia. Tamlin is at the 100 day mark post bone-marrow transplant or BMT for BPDCN treatment, or Blastic Plasmacytoid Dendritic Cell Neoplasm, a disease difficult to diagnose as it exhibits traits of leukemia and lymphoma, and exceedlingly rare as a childhood cancer. Only 2 other children in the world are kno...

The new children's book "My Dog Named Hope" is about a special girl, her amazing dog, and one 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. 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...

Amanda Haddock spent 11 years of her working career in the non-profit sector and 12 years working in the technology industry, a self-proclamed "serial volunteer" whose son, David, succumbed to GBM in 2012 at the age of 18. The doctors and researchers they encountered on that journey led her to become a passionate advocate for brain cancer research. David Amanda was named a White House Champion of...