Childhood Cancer Talk Radio Podcasts

Because most all of our children die from DIPG,the intense suffering and grief has remained out of sight and out of mind of mainstream consciousness for decades.

There is still insufficient awareness in Congress and in our society to the urgent, unmet needs of most children with cancer, and certainly brain cancer, a prevalent form of pediatric cancer, and the deadliest.

Today's show features 3 children and their families who in their own unique way helped inspire the DIPG Awareness Resolution in US Congress today.

Today's show features 3 children and their families who in their own unique way helped inspire the DIPG Awareness Resolution in US Congress today. We begin with Wendy Fachon of East Greenwich Rhode Island, and her son Neil; Wendy is an environmental science educator and advocate for children on many fronts. Next, Elizabeth Psar, an attorney ad Litem for children in Knoxville TN with the Julia Barbara Foundation and cofounder of DIPG Advocacy Group, shares about her daughter Julia and the pathway she has helped forge to raise national awareness for DIPG. Finally, Brian and Tamara Ekis from the Pittsburgh area in North Huntingdon PA share about their daughter Grace and Reflections of Grace Foundation, an organization which has been helping children with DIPG and their families, and raising funds for research, since 2009.

Meet Anne Beatty from Prattville, Alabama. She retired in December 2019 after teaching for almost 24 years. Sadly, complications from a brain tumor--physical, and social--made retirement unavoidable. Her brain tumor journey began July 4, 2018; she had open heart surgery in February 2018 for a previously undetected congenital heart condition. On July 4th, she had a stroke due to a second undiagnosed heart condition; her brain tumor was discovered at that time.

Anne has teamed up with DIPG Advocacy Group to raise awareness for this deadly pediatric disease. As a concerned citizen and brain tumor survivor she shares with others about brain cancer to help save lives and bring a cure faster to children afflicted with this deadly disease, as brain tumors are the leading cause of cancer-related death in children in the United States.

Marcelo Ortigao, associate professor of Preventive Medicine and Emerging Infectious Diseases at the Uniformed Services University (USU), and his wife Tanja Hess, large animal veterinarian and associate professor of equine sciences at Colorado State University Fort Collins, join us to share their family's recent and tragic loss, and resultant advocacy for pediatric brain cancer. Juliana passed away on March 3, 2019, as a result of DIPG, diffuse intrinsic pontine glioma. Marcelo and Tanja, and their surviving son Felipe, continue to contribute to the DIPG cause. Marcelo is the leading author of a white paper currently in the works and focused on the modernization of pediatric DIPG clinical trials.

This is Part II of a special audio presentation of the DIPG Awareness Resolution Celebration and Tribute to DIPG Angels, formatted specially for Childhood Cancer Talk Radio.

Today we honor the following four heroes for kids starting with the ongoing work of Kristen Gillette, with the Kortney Rose Foundation in Oceanside, NJ. An original and continuing supporter of the Children’s Brain Tumor Tissue Consortium, we honor today the life of her uniquely bright and sweet daughter Kortney.

Jenny and Mark Mosier, with the Michael Mosier Defeat DIPG Foundation in Bethesda, MD, and their crucial contributions to DIPG research as well as their DIPG Across the Map Campaign to have May 17 recognized as DIPG Awareness Day. Today we honor the life of their son, Michael who inspired this movement.

Bonnie Woodworth in Brandon, FL serves as is a Board Member and Legislative Director for 1Voice Foundation in Tampa, Fl; she is the Communications Director for the American Board of Pathology, and has provided editorial assistance to the Alliance for Childhood Cancer. Today we honor her beautiful daughter Tatumn.

And finally, Sam and Richard Perkins, long-time advocates for the National Brain Tumor Society and the Alliance for Childhood Cancer, join us to share with us memories of their son Sam, a gifted musical artist and an exceptionally kind and gentle soul.

The sibling perspective on childhood cancer is often the least recognized; our guest Rachna Prasad is an example of hope, inspiration, and dedication to a greater purpose. Her brother Mithil was afflicted with DIPG, the second most common and the deadliest pediatric brain cancer. As Vice President of the Mithil Prasad Foundation, and her work helping other cancer siblings with the Pediatric Brain Tumor Foundation, Rachna is an agent of hope within the DIPG community.

The Mithil Prasad Foundation is dedicated to supporting DIPG research and patients. It was formed in honor of Rachna's brother Mithil Prasad who fought a fierce battle against DIPG with his diagnosis in 2015. During his fight, Mithil always told his family how they should help kids just like him. Since his death, the Mithil Prasad Foundation has raised close to $250,000 for DIPG research and patient care, funding 3 clinical studies and supporting over 40 patient families.

Rachna will be graduating from UCLA this June with a BS in anthropology, and is preparing to begin a masters in cancer biology this fall at the University of Zurich, with the goal of becoming a physician researcher. She is currently planning to launch a podcast called "Hear the Rare" to raise awareness for all aspects of the DIPG experience, and foster a sense of hope for all affected by this terrible disease.

The year 2020 marks an important breakthrough for childhood cancer awareness with DIPG, perhaps the deadliest pediatric brain cancer. To commemorate DIPG Awareness Day, May 17, 2020, Tammi Carr(Ann Arbor MI), Ana-Mari Carr (Miami FL), Ellyn Miller (Leesburg VA), Margie Akehurst (Broken Arrow, OK), and Denica Harden (Gresham, OR) share about their precious children who lost their lives to DIPG, a merciless disease. While retaining full cognitive ability, DIPG takes away the use of children's bodies until respiration ceases, as their parent witness this in complete helplessness to save them. There has been no change in the standard treatment of radiation and palliative care since Neil Armstrong's daughter Karen died of it in 1962. With Part I we honor Chad Carr, Dean Carr, Bailey Dodson, Levi Harden, and Gabriella Miller.

The Gabriella Miller Kids First Research Act 2.0 was introduced in a bipartisan way on April 17, 2020. The original bill signed by President Obama in 2014 established a special fund and database with NIH for childhood genetic diseases and childhood cancers, an area of research which has been historically underfunded.

Learn how you can support this crucial legislation which allocates funds in a most creative way; without using taxpayer dollars, it accesses an unused fund of pharmaceutical company penalty fees. Tips on twitter and advocacy with Jill Morin, of Luke's Posse in Denver, CO, and Ellyn Miller of Smashing Walnuts Foundation in Leesburg, VA.

Ana-Mari Carr (Miami, FL) and Bonnie Woodworth (Brandon, FL), an experienced advocate and legislative director of 1 Voice Foundation, join us to discuss their vocational work as advocates for children with cancer--notably DIPG and pediatric brain cancer. The Florida contingency of advocates with DIPG Advocacy Group this year helped to ensure that S. Res. 587, the National DIPG/Pediatric Brain Cancer Awareness Resolution passed the Senate, and that the House Resolution or #Moonshot4Kids, H. Res. 114, got several more Florida representatives signed-on in support. We were joined by Christina Wascher, also from Miami, and Director of the "All in to Win" Foundation, who was an equally strong force in the group. Both Ana and Bonnie lost their children Dean and Tatumn, respectively, to DIPG, and Christina is a long-time DIPG advocate and foundation leader as a concerned citizen. They share their different experiences and serve as an example of how to work together as a group to raise awareness to the urgent, unmet needs of children with brain cancer in our society today.

Lainey Titus Samant is the Director of Government Relations at the National Brain Tumor Society. Lainey oversees NBTS’s grassroots advocacy program that includes volunteer brain tumor advocates across the country and also works with the rest of the government relations team to monitor and influence legislation and appropriations that affect the brain tumor community.

This year's NBTS "Head to the Hill" event will be conducted virtually due to the Covid-19 pandemic; each part of their "ask" of Congress, or support for policy and legislation, impacts the childhood cancer community from NIH/NCI to funding for the Childhood Cancer STAR Act and the Department of Defense’s Peer Reviewed Cancer Research Program.

Jenica Castillo-Harden joins us from Gresham OR to share her story of advocacy with National Brain Tumor Society; her son Levi was afflicted with DIPG and lost his life to this deadly pediatric brain tumor, as brain cancer is the leading cause of cancer-related death in children. Jenica shares why Brain Tumor Awareness Month is so important for kids with cancer, and about her joining the fight to advocate for House Resolution 114 which designates May 17 to honor children with brain cancer with DIPG Awareness Day.

Grace Wethor is an 18-year-old actress, model, and author based in Los Angeles, CA. After being diagnosed with a brainstem glioma at age 13, and given an 8% chance of survival over 6 months, she moved to LA and started pursuing her dreams. Since then she has spoken about her diagnosis in a TED Talk and released her bestselling book titled "You're So Lucky". She is still fighting her tumor but truly believes that sharing her experience can help others be inspired to pursue their goals no matter their situation or illness.

Grace's optimism is healing, and perspective on life, creative and pragmatic. With an unquestionable foundation of real experience facing terrible odds, her experimental approach to life and hopeful curiosity has the potential to help us all in these uncertain times.