Childhood Cancer Talk Radio Podcasts

“Eight years ago, a 15 month-old little boy with platinum blond ringlets and bright blue eyes was diagnosed with high-risk neuroblastoma, a childhood cancer that results in around 255 deaths/year in the United States. Based on the size, location and maturity of his tumor, the toddler had less than 50% chance to live long enough to attend kindergarten… Unlike most parents of children newly diagnosed with cancer, these parents were armed with decades of knowledge and experience in working with very same drugs that their son would receive intravenously. They knew about genetic markers and how these markers could predict their son’s prognosis and response to these drugs. Even though the biopsy indicated the child’s cancer was extremely aggressive, a genetic marker suggested otherwise; today he is a 13 year-old with no evidence of disease…”

The Nicholas Conor Institute was founded out of the parents sheer frustration of knowing that existing technology and academic discoveries are not being further developed to save the lives of other children with cancer. Beth Anne Baber, CEO, joins us to share her son's story and to discuss this incessant and gnawing motivation for many parent-advocates:

Why are existing technology and academic discoveries not being further developed for our children, adolescents and young adults? The answers are clear, and with increased activism and awareness of the realities so many children and their families are expected to endure, the solutions are visibly on the horizon for the childhood cancer community.

Live from Roy's 100 mi Run for Christopher in Santa Clarita, CA, Roy Wiegand joins us for news on his progress, the support of the local community for his efforts to raise funds for the Michael Hoefflin Foundation. We are joined by BethAnn Telford, veteran of the World Marathon Challenge, to support Roy and to hear about her accomplishments and challenges, with conversation between runners, with potential planning for events in the next year.

Everett Smith of Redlands, CA then joins us to report on his Appalachian journey with Tony Stoddard, legendary childhood cancer advocate and endurance athlete. Everett has initiated several endurance events benefiting pediatric cancer awareness and research, with his Appalachian trek benefiting Sophia's Fund at sophiasfund.org. Last but not least, we finish our heroes' round table with Brian Jones, founder of the Run for the White House event, which this year began January first and continues through September 17, the date of CureFest. He talks about the recent merger with MaxCure Foundation for a dynamic new start, and we discuss navigating the current political climate for our common cause of raising awareness for the urgent need for pediatric cancer research.

Sophie Ryan, daughter of Founder and CEO of CannaKids Tracy Ryan, inspired the birth of CannaKids. Sophie was diagnosed at 8 1/2 months old with an extremely rare brain tumor called an Optic Pathway Glioma; after using cannabis oil in combination with her chemo protocol, Sophie’s tumor shrunk by over 95%, a tumor which doctors said minimal shrinkage would be a best-case scenario. Doctors also said Sophie would have partial if not complete blindness with zero chance of saving her vision. After successfully keeping most of her vision intact, Sophie has become a medical miracle.

Tracy and her team at CannaKids have recently entered into collaboration with the Technion Institute in Israel where they are legally studying the effects of cannabinoids on many cancer types. CannaKids is sharing all of their patient data that they have been meticulously collecting. In addition to the research in Israel, CannaKids is in the planning phase with a major hospital in California and is expected to start in-hospital clinical trials on pediatric patients this year.

Who knew so much was beginning in Santa Clarita, CA, a medium-sized community with a significant influence and leadership in caring for others. Childhood Cancer is not a comfortable subject for anyone, yet the unspoken rule of family is ingrained in certain members of this community, and it dominates here. I'm talking about the Michael Hoefflin Foundation; I'm referring to Roy Wiegand, ultra distance runner for children with cancer, and specifically here, Christopher Wilke. I'm talking about a movement for awareness that has local origins, regional popularity, and national recognition, always supporting H.Res.69., existing because of MHF in a very important way; the foundation supported the family involved in advocating for this legislation. Roy Wiegand plans a 131 mile run to benefit the foundation, for the love of Christopher Wilke, and his memory, that we may acquaint ourselves with this beautiful and inspiring young man and support the families in our Southern California community who are suffering the beginnings of this challenging journey of childhood cancer.

Professionally, Theresa Beech has had 20 years of experience as a space engineer designing satellite mission ground systems. She has worked as a ground systems engineer, technical lead, subject matter expert, and program manager for a wide variety of satellite ground systems around the world. She comes to Childhood Cancer Talk Radio with the story of her son, Daniel, who's battle with osteosarcoma ended his young, beautiful life, and left his mother determined to find solutions for this devastating disease. As with the deadliest of pediatric cancers, there have been no innovations for osteosarcoma nor progress in survival rates in over 30 years. What makes this story so important is not only the devotion of this mother, her talent and intelligence, but her genius in applying her knowledge of systems engineering to osteosarcoma genomics-- no small feat. The result of this personal research gives new leads to greater biological understanding of osteosarcoma as well as potential solutions for treatment. Write to [email protected] if you are an osteosarcoma patient, parent, or researcher for more information.

G-TAC founder and Executive Director of MaxCure Foundation Jonathan Agin, and G-TAC Medical Advisory Board Member Dr. Sabine Mueller, top neuro-oncology researcher and clinical expert at UCSF, discuss a new concierge-type service for families of the newly-diagnosed with DIPG (diffuse intrinsic pontine glioma) to more expediently direct them to more effective combinatory therapeutic treatments to which they might otherwise not have access, or knowledge thereof. The current prognosis for DIPG is 9 months survival-time with treatment and options are extremely limited in our current landscape of medical research and clinical trials. The work of the Council or G-TAC is to continuously identify the most promising treatment modalities in terms of efficacy, timing, and collaborative and regulatory access, to accelerate and fine-tune decision-making regarding the treatment path for a DIPG child.

CCTR interviews Christine Hanlon, Executive Director of the KIDS Campaign or Kindness In Doing Service, a 501(c)3 charitable organization devoted to sharing love and service with the childhood cancer community. Christine lives in the greater Tampa Bay area in Florida with her son Dylan, a survivor of Ewings sarcoma. Melanie Crowell, also an executive board member, joins the conversation about the beginnings of the Kids Campaign and its continuing mission.

A warning to listeners, this contains emotionally sensitive material. CCTR interviews Judith Jaimes Contreras, mom to Ruben who is suffering through the progression of DIPG, a deadly pediatric brain tumor. She candidly shares the reality that hundreds of other families in the US are facing right now: the challenge of acceptance of the terminal nature of diffuse intrinsic pontine glioma, and the agony of witnessing Ruben's decline in utter helplessness.

Christina Bouraimi (mother) and Nick Maroulis (nurse) join us on CCTalkRadio from Athens, Greece to tell the story of a brave young man Theodore who lives day by day with progressed symptoms of Batten Disease, CLN3.

Christina describes the fairy-tale like joy of life prior to Batten, and the nightmare that ensued as her youngest of two boys went through the journey of diagnosis with Batten Juvenile CLN3 at the age of 6, which was unknown in Greece at the time in 2002. They received diagnostic news from U. Rochester in the United States, from Finland, and Germany to fully understand the scope of the illness. Theodore lives now a rich and well-scheduled life, enjoying music, political conversation, and following sports despite his loss of sight, cognitive and emotional challenges, and the threat of a deadly prognosis. Christina’s resolve to fight for her son in the difficult financial climate characteristic of life in Greece, and Nick’s compassion for the boy’s desire to live fully without question earns them the “Hero of the Week” title on Childhood Cancer Talk Radio; we salute Theodoros!

On April 13 2017 Childhood Cancer Talk Radio interviewed Roy Wiegand of Burbank CA, suburb of Los Angeles, a local free-lance musician with an evolving career as ultra-distance runner and advocate for children with cancer. Roy began running later in life in his early forties, and has been "ultra-running" for about 7 years now, prompted initially by his association through his church with an Ethiopian gentleman who was visiting to raise awareness for the urgent need for clean water access in his native country. This inspired his church to host a 100-mile bike ride with Roy leading the effort to make this event a staple fundraiser for the charity Lifewater, and challenge to riders with at 12,000 foot gain in elevation for the event.

Running for causes came naturally to Roy so that when he came across the Wilke family and their son Christopher, a boy-scout friend of Roy's son who had been diagnosed with a rare form of cancer with little hope for survival, he was inspired to run and raise funds for the local foundation supporting the Wilke family in their struggle. The Michael Hoefflin Foundation in Santa Clarita, CA, supports local families fighting childhood cancer in Southern California, and Roy has now run to raise funds for the foundation for the past four years. June 14th 2017 he will run his fourth ultra-distance run, this being 131 miles--his longest run yet--to support the Michael Hoefflin Foundation.