Childhood Cancer Talk Radio Podcasts

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 testament to the preciousness of her son Ben in his brave fight, and to the importance of embracing the best in each moment--and insisting on it.

Sarahs blog documenting Ben's awesome survival is at www.strongerthanilook.com, a must-read for parents of children with cancer.

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 research landscape with regard to the challenges facing treatment and the hope of new discoveries which give important clues to causes and biological understanding.

Dr. Monje and Dr. Green were conferring experts of Congressman Steve Knight's (CA-25) H.Res.69, the DIPG Awareness Resolution, which designates an Awareness Day for DIPG, and confronts the inadequacies of a medical research culture which systematically neglects those most urgently needing solutions, children with cancer.

Cecilio Torres, whos daughter tragically died of brain cancer and began the Gabriella's Smile Foundation(San Antonio, TX) in her honor, gives us the unique perspective as a parent. He is joined by Paul Miller (Littleton, CO), concerned citizen turned tireless advocate for children with cancer, who shares his perspective as an onlooker to a rapidly growing community of children with a so-called rare disease and their families in the last 5 years.

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, exposing the reality which so many face on a daily basis. Tom Mitchell and his crew's commitment to these children is personal. Tom runs for specific children each mile; he lost his own daughter to cancer, and crew members each run to overcome the seemingly impossible grief from which there is no escape, ending in triumph and catharsis for all participants. Jay describes his own personal journey in creating the film, his relationships with the different families, and how he became committed to helping the cause. He shares with us his hope that the film's impact on the general public will be proactive in its effect, ultimately making a difference in policy.

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 cancer inspired the Smashing Walnuts Foundation as well as the naming of this very important bill. Kids First 2.0, or H.R.2008, ensures the continuation of this project which funds urgently needed research into pediatric cancer and other genetic-related diseases considered rare in our medical research system. Her son Jake, Gabriella's brother, endures the pain of loss to which siblings are subject in their own unique way, as November is Bereaved Sibling Awareness Month.

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 life has given to research and progress for DIPG survival one day. Kenny from Michigan called in, having just lost his daughter to DIPG last May. Advocacy report focused on H.R.2008, Kids First 2.0, and H.Res.69, the National DIPG Awareness Resolution.

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 raising awareness to the urgent need for greater funding for pediatric cancer at the federal level. Chris Winters isn't waiting around for a national conversation; NC3 is finding solutions beginning at the state level, developing a formula of working which will hopefully be duplicable, to some degree, in other states. NC3 Treasurer Jennifer Swatzer joins us first to discuss the victory and also the moving and powerful story of her son Collin, survivor of medullablastoma.

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 Cancer Research Center. He is also a full faculty member at Fred Hutch, a professor at University of Washington, and he is recognized as a leading expert in the genetics of pediatric AML. Dr. Meshinchi’s research focuses on identification of new biomarkers and targets in pediatric AML to speed more tailored, targeted therapies and creative treatment options to young patients.

Julie Guillot lost her son Zach to pediatric AML and it's current torturous treatment process. It's her mission to change this by assuring that all children have access to tissue repository and genomic testing for more humane, effective treatment and to provide hope for all deadly pediatric disease with this new model for research and funding espoused by the Target Pediatric AML Program.

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 known to be actively combating the disease, the other being another 13 year old girl Caitlin Lee in Southern California. The girls meet on the air during the 4th segment of our show, and Caitlin and her mother Kelly have joined us on two prior occasions.

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 Honor Flights for Veterans of War. Joe joins us to discuss why he is so passionate about children with cancer and why he decided to write this book, the proceeds from which benefit pediatric cancer research and support.

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 Change for Precision Medicine because of her work with Dragon Master Foundation; she is the first foundation representative ever asked to be part of the Children’s Brain Tumor Tissue Consortium’s Scientific Committee. She also participated in the White House Cancer Moonshot Summit and has been invited to participate in advocacy/research efforts by The New England Journal of Medicine, Harvard’s Broad Institute, and Consumer Reports.

Amanda talks to us frankly about her experience, the formation of CBBTC/Cavatica, and how it empowers patient's data, an exciting new clinical trial opportunity soon to open up for high-grade gliomas and DIPG, the deadliest brain cancers with no truly effective solutions to date. Amanda's humility and dedication in her work is evident in the success of DragonMaster Foundation in its fostering effective collaborative organization in the the medical research community; she is Childhood Cancer Talk Radio's "Hero of the Week."