Childhood Cancer Talk Radio Podcasts

The Run for the White House is a grassroots movement of runners and workout enthusiasts all rallying with their personal brand of activism to support awareness for childhood cancer, using the social media platform of Facebook to share their activities and motivations. Brian Jones's mission with the Run for the White House quickly emerged to be making childhood cancer research a national priority. The rise of this movement which spans 2013 to present, was perfectly in the flow of the "Morethan4" movement and the growth of the annual CureFest event in September, and the nationwide effort to raise awareness for the gold ribbon for childhood cancer. In the previous podcast to this, we explain that Amazon, just this year, is the first company to "Go Gold" for childhood cancer, dedicating 1 million boxes decorated with gold ribbons for children with cancer. Just this year, the Run for the White House joined forces with MaxCure Foundation to increase its power to raise funds for childhood cancer research as well as being a powerful rallying point for thousands to raise awareness to the suffering that so many families must endure on a daily basis, and some forevermore as childhood cancer is the #1 killer of our kids in the United States after accidents and injuries. We learn the history of this movement which anyone, absolutely anyone can join, its purpose, and the vision behind it, and its continuing inspiration.

The gold ribbon and the childhood cancer awareness movement started with a few good moms (and dads) in the 1970s... Ruth Hoffman, CEO of the American Childhood Cancer Organization, walks us through the journey to today and Amazon's million gold ribbon boxes! "Still, there's a long way to go..." says Hoffman, long time advocate for children with cancer. ACCO is unparalleled with its information and service to families across the country, and in collaboration with other groups internationally to educate the newly diagnosed, to help them get the support and the knowledge they need to make the best choices for them and their child as they navigate the new, previously unknown world of pediatric oncology.

Annette Leslie is a mom who has been through the harrowing experience of losing her son to medulloblastoma in 2010. His extraordinary life and character inspired the Carson Leslie Foundation's inception that same year, in Dallas Texas, and launched her into a world of advocacy for children with cancer, pediatric cancer research, and working closely with legislators to promote the prioritization of pediatric research funding in a culture that is profit motivated and often neglectful of those most needy of a cure. Annette spoke at the 2010 Inaugural Summit for the Congressional Caucus for Childhood Cancer co-chaired by her Congressman, Michael McCaul, and in 2014 she began hosting the tradition of the Golden Toast to honor those key Congressional leaders responsible for supporting the continuing evolution of the childhood cancer awareness movement into laws that ensure that the leading disease-related cause of death in children in the United States will receive adequate research funding, and affected children will receive adequate care and support.

Beth Stefanacci and Carina Trenka join us to share their experience and agenda with Go4theGoal, founded in 2006 shortly after 13-year-old Richard Stefanacci was diagnosed with Ewing’s Sarcoma. During his treatment, his family quickly became aware of the lack of assistance available to families battling pediatric cancers. Go4theGoal's unwavering mission is to improve the lives of children battling cancer by providing financial support, developing and implementing unique hospital programs, funding innovative research, and granting personal wishes. Go4theGoal is one of the proponents and beneficiaries of the 2nd Annual Golden Steps for Pediatric Cancer led by Baby Shawn, turning the Niagara Falls gold in support of Childhood Cancer Awareness on September 1st.

Ellie Waters was diagnosed with alveolar rhabdomyosarcoma at the age of 14 and endured the heavy-duty treatments that this frightening disease necessitates, and is now at 16 a vibrant, bigger than life personality devoted to helping other children and teens with cancer. She comes to us from Northamptonshire in the UK with her twin sister Olivia and mother Sam Waters, each contributing to this story of love,certainty of faith in the face of difficulty, powerful support and advocacy for others. "Stronger together" is a motto of Team Ellie, and you can find Ellie's helpful blogs and videos for teens on Facebook's TeamEllieBlog, and Youtube channel Team Ellie.

Nicole Vathy, single mom of seven, shares her journey with her youngest, Shawn, who has been diagnosed with diffuse intrinsic pontine glioma. Shawn is one of the few who survive past the year mark to two years with a stable tumor. Nicole candidly shares with us this very difficult road with humor, horse sense, and a mother's love. Go for the Goal and Punt organizations are local childhood cancer groups benefiting from the Golden Steps 4 Pediatric Cancer led by Baby Shawn at Niagara Falls, a precedent setting event "going gold" for children with cancer all over the world.

Suzanne Gwynn has served as a critical care nurse for more than 35 years, in both the United States and Canada. During the first decade of her career, she served medically fragile patients who suffered from a variety of life limiting diseases in acute care settings. These experiences solidified her dedication to the field and encouraged her desire to specialize. She shares with us today her vision for LadyBug House, a concept and plan for leadership in palliative and acute care for child and adolescent patients in the United States, beginning in Seattle, WA.

Al Gustafson is on the Advisory Council of the Children’s Brain Tumor Tissue Consortium and serves on the Board of Swifty Foundation, among several others; in addition to his work in ministry, Al is the president of the Gustafson Family Foundation, a private foundation promoting the development and education of young children at risk. His son Michael was diagnosed with medullablastoma which unfortunately recurred after treatment and a declaration of having been cancer free; he knew he would not be here long, and succumbed to the disease in 2013. He shared with his family his excitement at the opportunity to donate his body to science after much introspection as to what his life meant after his prognosis was certain. His vision, to cure brain cancer, and the name Swifty defines the Foundation that has arisen and flourished as a result of his ultimate sacrifice.

Not only is Swifty Foundation successful at raising funds for pediatric brain cancer research, they are designing a program which facilitates urgently needed tissue donation for research. This much-needed program shows promise of having greater implementation on a nationwide basis, and further facilitating the research so urgently needed to save lives.

Caitlin joins us with her mom Kelly to update her progress since treatement for BPDCN, Blastic Plasmacytoid Dendritic Cell Neoplasm, a rare and aggressive form of leukemia. Caitlin describes as best she can her experience with chemotherapy, radiation, bone marrow transplant, and the tough decisions a very young girl has had to make with her family. Caitlin's grace and sense of hope is inspiring; she is truly a force for hope, compassion, and purpose in the world today. She is currently selling t-shirts to help give back to the all-to-often-forgotten teenagers at the pediatric clinic at City of Hope where she was--with special cards and age-appropriate items for them. Caitlin is the 3rd child so diagnosed in the United States and the first known survivor. We look forward to Caitlin's next update!

From Monterrey Mexico, childhood cancer advocate Christina Wascher joins the show with Kristoffer Nordstrom, father to 5-year-old Linnea who is currently undergoing treatment there for DIPG, with hopeful success 6 weeks into treatment. The Nordstrom family is from Sweden and they are prepared to remain at least six months in Mexico for Linnea's treatment. With Dr.s Siller, Garcia and Rodriguez, each specializing in a different modality, a more holistic approach to brain cancer treatment is showing great promise for further development, even for the dreaded DIPG. Christina Wascher advocates for children with cancer but focusing on DIPG right now, as the research represents the frontier of our medical knowledge and the need for solutions, dire. She assists families as well as advocating for the research itself for greater collaboration between scientists in the world.