Childhood Cancer Talk Radio Podcasts

Goodbye Little Dude is the remarkable story about seven-year-old Jonathan, his classmates, and a pet turtle named Little Dude. While Jonathan is unable to care for his beloved turtle on his own, Little Dude thrives and grows under the tender care of Jonathan’s classmates. Together, they all learn that kindness, hope, and love are part of saying goodbye.

The author, Rebecca Trotsky, gives us the background and details surrounding the creation of this special book with Marie Smyth, Jonathan's mother, who both join us for the show. The manuscript laid in waiting for nearly two decades before it found its day, but Jonathan's legacy, in a powerful metaphor with Little Dude, lives on in its life lessons for adults and hopeful comfort for children who have endured, or who are enduring in real-time, the pain of loss.

Jill and Cam Morin join us once again to share the success of their recent event, the Goddard Cares Fall Fest 5K in Denver, raising over $20,000 for pediatric brain cancer research at Children's Hospital Colorado.

On April 8, 2018, Luke’s family had received news that there was an inoperable and aggressive tumor in his brain called DIPG, diffuse intrinsic pontine glioma. After two radiation attempts and seventeen days later, Luke lost his battle; he was only 5 years old. Thus began the Morin family’s journey with “Luke’s Posse,” dedicated to funding pediatric brain cancer research at the University of Colorado, Denver.

Jill and Cam Morin also discuss the challenges of adjusting to a new reality without Luke being with them during the Holidays, along with host Janet Demeter who is now 7 years past losing her son Jack to the same disease. All those in our bereaved community are encouraged to reach out to helpful organizations in moments of need, such as GriefShare and Compassionate Friends.

Ricardo Garcia, CEO, Cesare Spadoni, COO, and Jonathan Agin, Head of Patient Advocacy for Oncoheroes Biosciences join us to discuss this relatively new biotech company, founded in 2017, and it's unique and thoughtful approach to childhood cancer research. The families of each of the three gentlemen have each been affected directly by childhood cancer and the lack of adequate treatments developed for children.

Oncoheroes Biosciences was formed, in fact, to confront the challenges of the current medical research system to addressing the needs of children in a comprehensive manner. First, their focus is to bring new treatments for children, specifically to the marketplace; second, research into subtypes is prioritized according to prevalence and mortality rate; third, they offer unique philanthropic opportunities of partnership and return on investment for non-profit and for-profit organizations.

Learn about their recent success in signing an agreement with the pharmaceutical company Boehringer Ingleheim International for exclusive rights to develop the drug Volasertib. A drug originally developed for adult leukemia, Volasertib shows great promise in treating a number of childhood cancers, and is currently being developed to treat rhabdomyosarcoma.

"While we wait," declared Jace Ward from Wamego Kansas, to an NIH Symposium on genomic data sharing in September, 2019, "DIPG won't wait! It won’t wait to take my mobility, my sight, my speech and my life…" With an extraordinary opportunity to shine a light on one of the darkest realms of pediatric oncology, Jace Ward, a young law student of 20 years, backed by his family takes on the burden of raising crucial awareness to the urgent, life/death struggle facing most all children diagnosed with diffuse intrinsic pontine glioma, the 2nd most common pediatric brain cancer.

Jace takes us through this journey with pediatric brain cancer, the leading disease-related cause of death in children in the USA, in real-time; his mother Lisa shares the reality with which families are invariably confronted, mostly in obscurity. The most promising treatments for DIPG are currently funded by parent-led foundations and for which participation is exceedingly difficult to qualify. We learn about Jace's fight for ONC201 to be available to more children facing DIPG and midline glioma, and the campaign for a hearing with the Health Subcommittee of Energy and Commerce, to bring attention to this issue of urgency to our lawmakers in US Congress.

Today's show features Nancy Goodman and Kids V Cancer, the notable leader in childhood cancer advocacy and legislation in the United States. Nancy wrote the Creating Hope Act of 2012, which has created over $1B in funding for pediatric cancer research in the private sector with the Pediatric Priority Review Voucher program. We discuss also the Race for Children Act of 2017. Nancy lost her son Jacob to medulloblastoma in 2010 because there were no cures available for him, and she was uniquely driven to solve this problem.

Learn how these bills work, how you can support their ongoing contributions to changing the landscape of pediatric cancer research, increasing funding for cures for our children with cancer. Nancy also shares about Kids V Cancer "Climb the Hill" days for children to advocate for their peers on Capitol Hill, a unique opportunity for young people to learn about participation in our representative democracy.

From Denver Colorado we bring to you Jill and Cam Morin, who established in their son Luke’s honor a fund for DIPG Research at Children’s Hospital Colorado raising over $230,000 at 22% of their goal. They are gearing up for the Goddard Cares Fall Fest 5k in honor of Luke Morin; sadly, Luke passed away in 2018 just 17 days past diagnosis, of the deadly DIPG, diffuse intrinsic pontine glioma.

Dr. Rajeev Vibhakar, at Children’s Hospital Colorado works along with Dr. Adam Green and others on the cutting edge of cancer research with a laboratory devoted to finding solutions for DIPG. Their work is funded mostly by parent-led foundations.

“Philanthropy is the foundation for all the research that we do here; without donors, our work simply wouldn’t be possible. With continued support, I know we can change the outcomes for these kids."

DIPG Advocacy Group Founders Paul Miller of Littleton, CO and Elizabeth Psar of Knoxville, TN come together with host Janet Demeter to discuss progress made in their advocacy for families around the US affected by DIPG pediatric brain cancer, on their most recent trip in September 2019. Hear about the Hearing Request for Jace Ward and H. Res. 114, and the next steps for DIPG Advocacy Group in raising awareness for the deadliest childhood cancer and the fact that childhood disease research is not adequately supported by the system in place.

On Friday, Sept. 20 this new bill, H. R. 4429, the Fairness to Kids with Cancer Act of 2019, was introduced to the House of Representatives by Brian Fitzpatrick of Pennsylvania's 1st District. Two years prior the Congressman had attended a gala hosted by Storm the Heavens Foundation in Philadelphia, PA, with Executive Director Mina Carroll. He was strongly affected by the eloquence of Mina's speech about the merciless killer DIPG, diffuse intrinsic pontine glioma, and the fact that our federal government on any given year over the last decade has directly purposed less than 4% of its cancer research budget to pediatrics. As a result, deadly and prevalent pediatric brain cancers like DIPG have had no progress in standard treatment nor terminal prognosis for decades. The gist of her message is that we must do better for our children, and she challenged the lawmakers in attendance to do something about it!

Steve Healey, CEO of the Brooke Healey Foundation in New Providence, NJ joins us also, as he has played an important role in the creation and ongoing support for this important new bill. Congressman Fitzpatrick joins us during the 2nd segment to share about the conception of the legislation, it's specific vision of fairness in policy, and his hopes for inspiring support for this cause in the childhood cancer community.

Thursday, Sept. 26 show features interviews with key individuals with important information about CureFest, the rise of childhood cancer awareness, and issues facing childhood cancer families today. The episode marks the passing of the 10th Anniversary of the Childhood Cancer Caucus Summit, to which Congresswoman and Co-Chairman Jackie Speier (CA-14) shares her experience; Donna Speckard, producer of The Promise docuseries witnessed the beginnings of CureFest, and comments on progress made in our community since then. We also visit with Annette Leslie of the Carson Leslie Foundation, hosting the one and only "Golden Toast" event preceding the 2019 Caucus Summit, and Jace Ward, a 20-year old law student afflicted with DIPG, along with his mother Lisa Ward.

Al Gustafson is back! The Swifty Foundation was created to celebrate the life of Michael Gustafson who died in 2013 at the age of 15 from brain cancer. Prior to Michael’s death, his parents decided to use the money they would have invested in Michael’s life, for education, support, and inheritance, and start a foundation. Michael was charged with choosing the mission and name.

The focus of today’s show is the Swifty Foundation's program called "Gift from a Child", a national initiative of families, foundations, researchers and the institutions they are apart of, to better facilitate and help educate the public about post mortem tissue donation. Born out of Michael’s donation experience, the Swifty Foundation has been the catalyst and primary funder of this program.

The web address is www.giftfromachild.org; some of the foundations involved with Gift from a Child you might know are McKenna Claire, Unravel Pediatric Cancer and Live Like John. The Monje Lab at Stanford, Lurie Children’s Hospital, CHOP and Children’s National in DC, are also participating currently.