Childhood Cancer Talk Radio Podcasts

Today's show features interviews with Tammi Carr and Jenny Mosier, leaders of their respective foundations, Chadtough, in Ann Arbor Michigan and Michael Mosier Defeat DIPG Foundation in Bethesda Maryland, recently merged into the ChadTough Defeat DIPG Foundation. Each foundation leader has trailblazed on her own, and in collaboration with others, research in pediatric neuro-oncology and in raising needed awareness for the urgent, unmet needs of children with brain cancer.

Both leaders have lost their precious son's to DIPG, diffuse intrinsic pontine glioma, the deadliest childhood cancer, and were left by the experience determined to change the status quo and pave the way to a cure. Stronger together, they are a force for hope for thousands of children and families across the USA and around the world.

After losing his precious son Talin to brain cancer, Gerry Tye of Sydney, Australia took a leadership role in creating support and networking for the childhood cancer community, specifically for DIPG and childhood brain cancer during a critical period of growth between 2012 and present. Founder of the DIPG Research Group and administrator for DIPG Awareness for Family and Friends groups on Facebook, Gerry has helped provide a platform and networks for parents find help for their newly diagnosed children by tirelessly providing the latest information in research and clinical trials available around the world.

Mariah Olson was diagnosed in 1980 with neuroblastoma at the age of one year, and is a living testament as a survivor to the difficulties that so many children with cancer endure as a result of toxic, out-dated treatments they receive. She also attests to the pycho-social challenges of growing up with severe medical issues which affect children with cancer. Most importantly, she is a testament to the power of hope and positivity amid these challenges which are generally the source of despair and great suffering. Mariah is a champion for other young people afflicted with cancer; she works for nine non-profit childhood cancer organizations and advocates for others at both the state and national level. Withstanding all that she has been through, she triumphs as an oboist with several musical ensembles and is happily married. We are blessed to share conversation with this outstanding advocate with such generosity of heart, and look forward to the publishing of her autobiography, "Hope Over Despair."

Mina Carroll with the Storm the Heavens Fund literally coined the “We Must Do Better” phrase, for children with cancer, in confronting the terrible reality in our society today that children are for all practical purposes neglected for research funding by the system in place. Mina's beautiful daughter Philomena was afflicted with DIPG, the killer childhood brain cancer with a less than 1% long-term survival rate. Mina shares with us her experience in growing a foundation, raising funds for research, but most importantly--lifting her voice on behalf of children with cancer who are underserved by the medical research investment culture today.

Mina Carroll worked with Congressman Brian Fitzpatrick to introduce the 2021 Fairness to Kids with Cancer Act, a precedent setting bill for children calling for greater research funding for this vulnerable and precious population, H. R. 2210.

PNOC Foundation Administrators Allyn Campbell and Rachael Cassells join us to discuss the May 1 DIPG/DMG webinar and how people can register at www.PNOCF.events, and other upcoming webinars for the special month of May.  For Brain Tumor Awareness Month, we share childhood brain cancer statistics and facts, and why awareness for childhood brain cancer is so important for research, and outcomes.

AND! The May 1 webinar on DIPG/DMG will repeat, so be sure to visit pnocf.events for more information.

The Pacific Pediatric Neuro-Oncology Consortium (PNOC) is an international consortium with centers within the United States, Europe, Asia and Australia, dedicated to bringing new therapies to children and young adults with brain tumors with the goal to improve outcomes by translating the latest findings in brain tumor biology into better treatments for these children.

Christina Wascher, a long-time childhood cancer advocate, is the President and founder of the All-In-to-Win Foundation based in Miami Florida since 2013. Christina has been a philanthropist and an entrepreneur in US and European project developments for Claridon International since 1982, specializing in start-up projects and bringing them to completion. She brings her expertise to the field of pediatric neuro-oncology in support of pharmaceutical interests needing greater support to meet the clinical needs of children, and facilitates the work of researchers and doctors in neuro-oncology by effective networking and communication skills. An active and passionate advocate for children with cancer, she helps push pediatric treatments forward and helps families with support through financial aid. Perhaps All In To Win's most treasured role is in bringing smiles to so many faces of these courageous children. The foundation is a lifeline for many families who do not have a local organization for childhood cancer, or near to the treatments they need.

Mark Levine is one of those special people who are moved from an inner conscience and love for all children. Mark and his wife Debbie live in Stoughton, MA and have two children and two grandchildren. Retired from managing a small business for many years, Mark now devotes his life’s work to advocacy and activism for children afflicted with cancer.

He began volunteering for the Jimmy Fund in 2007, working events in area high schools to help this fundraising arm of Dana Farber. In 2013 he began his own brand of fundraising event the Jimmy Fund called, “Putting for Patients”, and he also visits once or twice a month, the oncology ward at Boston Children’s Hospital. From these experiences he has become passionate about the important aspects of pediatric cancer such as psychosocial issues for these children, and the long term side effects of toxic treatments.

After the 2020 pandemic shut down all of his events, he decided to start a pediatric cancer podcast to keep awareness of childhood cancer in the Public eye and also to continue supporting the Jimmy Fund. It’s called, “Help and Hope Happen Here”, and began in August of 2020. It can be found on Apple, Google, Spotify and other podcast directories.

Three experts and current leaders in their respective fields join us today to discuss their involvement with the Childhood Cancer Prevention Initiative, beginning with David Levine, CEO of the American Sustainable Business Council, an organization which recognizes that our current system of capitalism does not work for most Americans, and strives to facilitate communication, conversation, and innovation to create an economic system that works for all. The (ASBC) is the leading business organization serving the public policy interests of responsible companies, their customers and other stakeholders. ASBC advocates for policy change and informs business owners, policymakers and the public about the need and opportunities for building a vibrant, broadly prosperous and sustainable economy. Mr. Levine is joined by Jonathan Agin, CEO of the PREP4Gold childhood cancer foundation, and Nsedu Obot Witherspoon (MPH) who serves at the Executive Director for the Children’s Environmental Health Network (CEHN).

Dr. Ray Takigiku (founder and CEO) and Dr. Richard Curry, Medical Affairs Consultant at Bexion Pharmaceuticals discuss BXQ-350 and the 2 phase II adult clinical trials coming up as well as a phase II for a pediatric brain tumor, a potential breakthrough treatment. Additionally, other clinical and non-clinical data suggest BXQ-350 has activity in CNS diseases, including peripheral neuropathy. Learn about the cutting edge biological paradigm of leveraging the lysosome, as Bexion believes the lysosome is an underexploited cellular orchestrator involved in multiple diseases. BXQ-350 is a first-in-class biologic containing the multifunctional, lysosomal activator protein, Saposin C and a phosphatidylserine.

This edition of Childhood Cancer Talk Radio gives a personal look at the landscape of childhood cancer advocacy over recent years, between parents of children afflicted with brain cancer. For this, I have the honor of sharing conversation and perspective with fellow advocate Jonathan Agin, whose participation in the childhood cancer community spans this past decade and beyond; he brings significant legal, biotech, corporate management and parental experience to the field, which has seen advances in legislation, the formation of new networks benefiting patients and families, and greater participation of parent advocates at the federal level. From this perspective, we take a look at the actual progress made for our children who become diagnosed with various cancers, the still deadly and lesser-known yet largely prevalent subtype of childhood brain cancer, with a hopeful look toward the near future as the need for greater research into causes and conditions begins to get more attention with the Childhood Cancer Prevention Initiative.

Most recently, In January 2021 Jonathan formed PREP4Gold (Preparation, Research, Education and Programs for Childhood Cancer--formerly "Connor Cures") and serves as Executive Director.