Childhood Cancer Talk Radio Podcasts

The title of our podcast is a loving tribute to our guest's son Zach's spirited and inspirational fight against Acute Myeloid Leukemia. From TARGET Pediatric AML to the new Children's Initiative with Leukemia Lymphoma Society, this literal AML dynamic duo, Julie Guillot, patient advocate, and Michael Copley, national chairman of the Harry T. Mangurian, Jr. Foundation -- Beat AML campaign, have created an unprecedented partnership to cure pediatric AML. They come by it honestly; each having suffered the intense grief of each having lost a precious child to pediatric AML, learn how they've succeeded from the humble beginnings of a grassroots "posse" of parents to lassoing the corporate giants to prioritize childhood cancer.

Philip Manduca, a financier residing in London, UK, serves as treatment advisor with the DIPG Treatment Advisory Council, and has been instrumental to the development of the new, international treatment program for pediatric brain cancer at Zurich Children's Hospital in Switzerland. The program offers personalized treatments and multi-modality developments in the latest research in pediatric neuro-oncology, developed for diffuse instrinsic pontine glioma and midline glioma. Because of the controversial nature of experimental research and treatment for children, the program's development has been somewhat guarded from public view until now.

The Hood-to-Coast Relay 2019 quickly approaches (August 23-24) and for this special event we are hearing from the MaxCure Foundation Team and beneficiary, the Children's Cancer Therapy Development Institute (cc-TDI). Jonathan Agin, Executive Director of the MaxCure Foundation joins us in the first segment, giving background to the childhood cancer awareness movement and the urgent need for greater funding of research activity into childhood cancers.

Brian Jones, ultra-distance runner activist for children with cancer, and founder of the Run for the White House phenomenon on Facebook, leads the MaxCure Team in its quest to raise funds for a special project for pediatric AML(acute myeloid leukemia) at cc-TDI, a non-profit biotech in Beaverton OR specializing in finding viable treatments for pediatric cancers of all kinds. Scientific Director Dr. Charles Keller tells us about the project and also the involvement of an 8th grade science class with the Institute in this special venture with MaxCure Foundation and cc-TDI.

Larry Perfetti, President of Kier's Kidz, a 501(c)3 charitable organization in Highland Park, NJ, dedicated to helping children with cancer and their families and supporting childhood cancer research, joins us along with Caroline Kratka, Genetics major at Rutger's University Honors College, who serves on Kier's Kids Advisory Board and shares about youth engagement and advocacy with the foundation. Kier's Kidz was inspired by the hopes and dreams of Larry's daughter Kiersten who succumbed to alveolar rhabdomyosarcoma when she was just 22.

Songs of Love President John Beltzer also joins us to share about the healing gift of music that is his organization's mission, also a 501(c)3 charity, dedicated to uplifting the spirits of children with life-threatening illness or permanent disability. Artists from around the world create professionally produced songs in the child's favorite genre, including aspects of the child's life, hopes, dreams, and likes. Beltzer's work is inspired by his musically talented twin brother, Julio, who died in 1984.

How did we get here, with a medical research system teaming with money and activity, but so few solutions and options for deadly cancers, especially pediatric cancers? Randy HInton, of Cross Hill South Carolina, is a childhood cancer advocate and father to Hayley who died of DIPG in 2006, diagnosed in 2005 at just 5 years of age. He brings us an in depth report of the early years of the AMA, drug companies, and the doctors who would not be bought.

Following the death of his daughter Shayla in 2009 from Hodgkin’s Lymphoma Tom dedicated his entire life to providing non-medical support to children with cancer and their families. He’s also committed to raising awareness of the need for more research funding and safer, less toxic treatments for children with cancer.

An extreme runner, he completed a 200 mile run at Lake Tahoe in 2015, and has been featured in an award-winning documentary and Emmy-winning news stories of his exploits. To date he has raised over $800,000 for Stillbrave just through his ultrarunning endeavors.

But on a regular day, you’re likely to find him on a personal visit either at the chemo clinic or at a child’s bedside, or on the streets of Washington D.C. carrying a sign, loudly and unapologetically vocal about what matters most, awareness for our children with cancer and the urgent need for solutions for them.

Get a sneak-peek at his upcoming 200 miler in Washington State where he will be accompanied by a childhood cancer survivor to make "Team Two-Feathers" for StillBrave Foundation, and take heart in a personal story of transformation and hope.

Our show features a window into the experience of a father, Mark Hyde, who literally chose to go to the ends of the earth for his daughter, honoring her life with a journey to the north pole. While she was fighting rhabdomyosarcoma, Juliet went with her dad, sister, and mom on quick, day-trip excursions into the beautiful German countryside, as time and hospital proximity would permit. Mark had been contracted to work in Germany at the time, having come from California. Upon their return, however, the effects of her cancer took another turn.

Featured also is cc-TDI, Children's Cancer Therapy Development Institute led by Scientific Director Dr. Charles Keller, in Beaverton OR, and the innovative, child-centric research funded mostly by parents, which serves as a beacon of hope for thousands in the childhood cancer community worldwide.

Sandra Brown joins us on Childhood Cancer Talk Radio from Dillon, South Carolina to share the story of her beautiful, 10 year old granddaughter who is fighting brain cancer like a champion. Involved in an ongoing clinical trial for DIPG, Kendal was an honor student this past year, and is an All-Star softball player. Not only do we hear from her grandmother, but we are fortunate to hear from Kendal herself about what life has been like for her. We also hear from her mother, Amber Gaddy, who shares the challenges of pediatric brain cancer.

May 2019 has witnessed important advances in pediatric brain cancer awareness, advocacy, and the fulfillment of a life-time dream by a dedicated brother and his friends for Kayne Finley of Ormond Beach FL, deceased 18 months ago to DIPG. DIPG is the second most common but deadliest pediatric brain cancer, and has been instrumental, for all of its horror, to raising awareness to the urgent needs of children with cancer for research into cures. Cannonballs-Across-America is a coast-to-coast cycling event to raise funds for pediatric brain cancer research in honor of Kayne Finley, a kind young man dedicated to his faith that one day, we will find a cure for DIPG. DIPG Advocacy Group members Paul Miller, Elizabeth Psar, and Wendy Fachon share their experience in seeing the first National Awareness Resolution for DIPG pass the Senate.

Cynthia Martucci and Angelina Shao begin internships at cc-TDI, Children's Cancer Therapy Development Institute as undergraduates for the summer of 2019, and we learn about their projects, mentorships, and what it is like to work as a scientist in a progressive biotech lab devoted to pediatric cancer research.

Cynthia Martucci just finished her Freshman year and is assisting with the DIPG Tumor Cell Hotel project, her work mainly devoted to materials discovery merging oncology with biomechanics at the molecular level. Angelina Shao just completed her junior year in college, on a medical path, and is exploring the effects of a multiple array of therapies on different pediatric cancer cell lines, including clear cell sarcoma.