Childhood Cancer Talk Radio Podcasts

Candice Hamman and Carl Jansen VanVuuren tell the story of their son Owen who was diagnosed in June 2020 with DIPG, diffuse intrinsic pontine glioma.  There are no treatment options besides the standard radiation and palliative care, and purchase of the experimental ONC201 from Germany.  Candice and Carl share from the heart what it's like to feel helpless to save their son, yet determined to have faith that they'll get that needed break, somehow.  Childhood Cancer Talk Radio is committed to helping connect this family with needed resources and information.  Sadly, promising clinical trials are difficult to qualify for and not available in South Africa.  For more information about Owen and his family, visit www.facebook.com/fightforowendipg

The Shepherd Foundation is working with Congress to introduce a bill to position the rare cancer community for better outcomes. Founder and rare cancer patient David Hysong and CEO Catharine Young join us to discuss the recent virtual briefing with Congressman G.K.Butterfield (NC-1) and Gus Bilirakis (FL-12), Greg Simon, former Director of the Cancer Moonshot and President of the Biden Cancer Initiative and others regarding a pivotal legislative measure to be introduced before the end of 2020. The Rare Cancer Awareness, Research and Treatment Act of 2020 1, sets the federal incidence definition of rare cancer as there is no current global standard as such, 2, increases research and development funding, and 3, mandates coverage for molecular diagnostics and genetic counseling at diagnosis for Medicare patients.

Marti Jaenke Dexter tells the story of her youngest daughter of four children, Juliette, described sweetly as her "gift from God." She was born on July 9, 2003 with two rare genetic conditions, Pierre Robin Syndrome and Moebius Syndrome. Though one required surgery as an infant, Juliette had a happy, healthy childhood and social life. She was diagnosed in 2014 with Myelodysplastic Syndrome (MDS)with a very high probability of developing leukemia; the discovery of bone marrow fibrosis was tragically not in her favor for treatment. The family did not give up hope and went through a Cord Blood Transplant which unfortunately failed. Her second transplant that December resulted in GVHD to which she ultimately succumbed.

Juliette left a legacy of healing and hope with her family which you may follow at "Juliette's Journey of Healing and Hope," on Facebook. Marti plans to publish a journal book for children inspired by this journey, a tangible gift of their forever bond. Our advocacy segment focuses on H.R.6556, legislation that supports the NIH Kids First Research Database, a crucial source of information and clues for the medical community of rare genetic pediatric disease and pediatric cancer.

Childhood Cancer Talk Radio has the privilege of sharing with our listeners a window into the lives of three families facing a similar challenge: a child diagnosed with DIPG. At varying places in the journey, David Turner Jr., and Jayce Diaz, and Ryan Agnew, father to Aspen (4) share the realities of their lives. David Jr. has become an advocate for protecting on another in the pandemic, and speaks out for the use of masks. He shares with us his determination to make each day the very best day ever. Cassie Diaz relays messages from her son Jayce, as we witness the heartbreaking cruelty of the disease afflicting this bright, sweet young boy. And finally Ryan Agnew shares the angst of a new diagnosis amid the period of respite from DIPG due to radiation treatment and all the conflicting thoughts and feelings it brings. Ryan is focused 100% on sharing his experience, that others might benefit from increased awareness and attention today to bring a cure more swiftly.

It's Childhood Cancer Awareness Month for all of our guests every day of the year...so it's important to us to share with the world our stories and the truth about childhood cancer. Today we see commercials asserting that 80% of children survive cancer, touting the work of this or that institution; many might thereby deduce that we're doing great with childhood cancer, and in supporting childhood cancer research...that most kids survive, and, we got this. But from the perspectives of our guests today, nothing could be further from the truth.

Co-founders of DIPG Advocacy Group Elizabeth Psar from Knoxville, TN, Paul Miller from Littleton, CO and host Janet Demeter from Agua Dulce, CA discuss the reality of advocating for "The Little Bill That Could" aka #Moonshot4Kids for the last 4 1/2 years, bringing stories from around the country to lawmakers offices in Washington, DC, discussing the urgent need for solutions for children with brain cancer. Childhood Brain Cancer is the leading cause of childhood cancer deaths. It is also the most prevalent subtype of cancer in children. Discover the fact that our research investment culture does not prioritize children, or those facing certain death, that we must fight to have this fact recognized.

Finally, Dafina Basha joins us from Yonkers, NY. She tragically lost her only child, her beautiful daughter Elita to DIPG, diffuse intrinsic pontine glioma, and tells us how she is turning a death-bed promise that she would fight for other children with DIPG to one day have viable treatments, into meaningful advocacy with impact, today. She and Elita are Childhood Cancer Talk Radio's Heroes of the Week.

The Fight Like Emilie Foundation is dedicated to supporting research, families, and initiatives and policy for childhood cancer awareness and research through advocacy. Trey Gibson joins us from Bossier City, Louisiana, to share the story of his daughter Emilie who was diagnosed with DIPG, a pediatric brain cancer in September of 2016 at the age of 9.

Over the course of her 14-month fight, she received treatment in Shreveport, Memphis, San Francisco, and Houston all while trying to be a normal little girl. Since her passing on Halloween night, 2017, along with Emilie's mom Candi, brother Alex, and several great friends, Trey Gibson founded the Fight Like Emilie Foundation.

Jonathan Daniels, Senior Manager for Policy & Advocacy at the Cystic Fibrosis Foundation, lobbies Congress on behalf of the more than 30,000 people with Cystic Fibrosis in the United States on issues ranging from access to adequate, affordable health insurance to research and development policy.

The Cystic Fibrosis Foundation (CFF) is the world's leader in the search for a cure for cystic fibrosis, advocating for programs, agencies and policies that help advance research and drug development, improve access to specialized, quality cystic fibrosis care and raise awareness about the disease.

CFF strongly supports paid leave in the next COVID package, as well as increasing the federal match for Medicaid, COBRA premium assistance, creating a Special Enrollment Period for people to signup for insurance on the individual marketplace (Obamacare), and supporting R&D investment in new antibiotics and a more stable antibiotics market.

In the year 2000, the annual reinsurance industry’s St. Patrick’s Day party, held at Jim Brady’s pub in Manhattan, becomes the first St. Baldrick’s event. The goal of shaving 17 heads and raising $17,000 turns into 19 bald heads and $104,000 donated to fund the research of the Children’s Oncology Group. By 2019, they had broken all fundraising records for childhood cancer research, helped support research into the new childhood cancer drug for neuroblastoma, and reached $300 million in research since 2005.

Our show's special guest, Sarah Milberg, became the new Director of Government Relations and Advocacy for St. Baldrick's in January 2020 with over 10 years of experience of government relations and politics, and leading the Leukemia and Lymphoma Society's federal policy work on childhood cancer and research funding. She also serves, currently, co-chairman of the Alliance for Childhood Cancer, a coalition comprised of more than 20 national patient advocacy groups and professional medical and scientific organizations.

Today’s show is a special tribute to the superhero advocates in the childhood cancer community, those concerned citizens among us who never draw attention to themselves but serve to help children with cancer in a variety of capacities, but one aspect of their lives which we are recognizing today is that each is acting out of empathy and compassion without having had one of their own children affected by cancer.

We have today the opportunity to meet the mild-mannered alter-egos behind this super-power of three concerned-citizen advocates for children with cancer:

Ginger Diamond, a retired nurse from Douglas, GA; Paul Miller joins us from Littleton, CO, who has been in corporate America for many years, and Kristopher Murdock, a music teacher and substitute elementary school teacher, also with a ministry of drama and music, from Frederickstown, Missouri.

Our Amazing Fighters started as a simple instagram page in August of 2014 by now 19-year-old LeAnna Headley from Richmond, VA to raise awareness for childhood cancer. Since then it has evolved into so much more than a social media page; Our Amazing Fighters is devoted to raising awareness, sharing stories, advocating for kids on Capitol Hill, and bringing joy to kids and their families as they fight pediatric cancer.