Childhood Cancer Talk Radio Podcasts

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 book in 2010 shortly after Carson passed away, Congressman Michael McCaul (TX-10), Founder of the Congressional Childhood Cancer Caucus (CCCC), invited Annette to speak at the inaugural Childhood Cancer Caucus meeting in his Washington, DC private home. The rest is not only history, so to speak, but an amazing journey of discovery, teamwork and partnership between Congress, childhood cancer advocates, and the cancer research community.

The Carson Leslie Foundation and CPRIT partnership has increased the level of designated CPRIT funding for pediatric cancer research three-fold. The Cancer Prevention and Research Institute of Texas is second only to the Federal Government in its funding for cancer research in the United States.

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 the pilot project was to build an open access, collaborative, multi-institutional research infrastructure with high quality informatics and data to empower the next wave of precision medicine approaches for cancer therapeutics. Today this is known as Cavatica, a cloud-based environment for securely storing, sharing and analyzing large volumes of pediatric brain tumor genomics data.

Ellyn Miller, president of Smashing Walnuts Foundation(VA), was equally inspired by her daughter's journey with DIPG, a walnut-sized deadly tumor in her brainstem. Ellyn describes how her daughter's advocacy for other children with cancer in a public spotlight helped attract the help of key lawmakers to introduce the Gabriella Miller Kids First Research Act, signed into law by President Obama in 2014. This legislation initiated the Kids First Pediatric Research Program with NIH, a large-scale data resource to help researchers uncover new insights into the biology of childhood cancer and structural birth defects, including the discovery of shared genetic pathways between these disorders.

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 has been to date funded almost entirely by the collective resources of parents and other philanthropists familiar with its challenges.

Amanda Haddock of DragonMaster Foundation joins the discussion in the second half to speak to data resources and the sharing capabilities of Cavatica.

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 grants totaling $10.5 million to leading doctors and researchers at top institutions throughout the United States.

Alongside CBTFs commitment to research, Kayla Giacin explains in depth the support programs for survivors that "change lives," bereavement support, camps for families and upcoming events providing opportunities to support the work of CBTF.

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 lucky, to live. After the standard 6 weeks of radiation, the tumor's growth was not deterred; her condition was not temporarily improving as hoped.

Her physicians were aware of the clinical trial with ONC201, and had Anjalie begin within a month's time; she continues to participate, now 19 months later, and is doing well.

Anjalie and her parents join us to share the details of their journey together, and hopeful plans for the future.

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 Helping Parents Heal.

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 petitioning for a Congressional Briefing, as Jace prepares to speak before Members of Congress and staff to the urgent need for greater awareness and research activity and collaboration for the deadliest pediatric cancer.

"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 family.

"Family moments don't end because visiting hours are over."

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 Bryanna’s Love, Inc will provide the same comfort to the patients and families battling childhood cancer.

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 as a postdoctoral fellow in bioinformatics and molecular biology, with the goal of turning his research on personalized combination cancer therapy into a clinical tool to help cancer patients in need. This goal became his own start-up, First Ascent Biomedical, with the mission of making combination cancer therapy rapid, affordable, and personalized to the individual patient.

“No one should ever run out of options in the fight against cancer.”--Noah Berlow Ph. D