Childhood Cancer Talk Radio Podcasts

Melissa Castango joins us to share the story of her daughter Zoe, diagnosis with brain cancer and the beginnings of her journey with Zoe's Butterfly Foundation in Milford, CT. The realities of a terminal diagnosis for the family including changes in friendships, family structure, and the desire to honor and preserve the memory of her daughter are an ongoing journey of discovery and determination to raise awareness for a more hopeful future for others. DIPG is not so very rare. Part I.

Heroes and Angels in Little Rock, AR is the real deal: a small, grassroots organization doing everything humanly and angelically possible to support children with cancer by helping local families, raising awareness to the urgent need for greater pediatric research funding, and with Ken's amazing bike rides for kids. He's ridden over 270,000 miles so far, and is gearing up for the big 10,000 miler in May. Visit www.heroesandangelscorp.org, and @heroesandangelscorp page on Facebook, for more information, and to follow Ken!

Jim Churchman joins us to share the story of the Smile High Club, a non-profit organization dedicated to putting smiles on faces and hope in the hearts of children facing illness or any physical challenge. A stuntman for many years, Jim Churchman is a 2nd Unit Director and Stunt Coordinator with over 100 film and television credits, and his "give back" to the community is to create this fantastic scenario where the kids actually get to fly like a superhero on wires with GoPro video capturing the experience! His stunt colleagues join in the fun to support the kids experience and to make it all happen. The Smile High Club's 3rd Event is this Saturday, March 17, in Agoura Hills California.

Inspired by his late mother and inspirational colleague who lost his life to stomach cancer at 27, the dedication Jim Churchman has to following his heart is what makes him Childhood Cancer Talk Radio's Hero of the Week!

Nurse and family confidante Nick Maroulis, and brother of Theodore Vasilis Ntoumas join us to discuss Batten disease and the effects of fatal, rare, pediatric disease on the family and in a country where support is so difficult to instate. Nick comes to us from Greece, while we speak with Vasilis who now lives and works in London. Theodore is a living miracle, still active in his life and a source of love and inspiration to those who know him. Research into cures for this deadly, genetically caused disease is still in its infancy, and the family--in particular Theodore's mother Christina, strives to create greater awareness and a stronger network of concern around the world with their website, www.theodoresmiracle.com. This conversation is a wonderful update to our original show with Theodore's mother Christina, with Nick, in April of 2017. Theodore's brother Vasilis, who talks to Theodore every day via Skype, adds a beautiful dimension of love, hope, and togetherness that only a sibling can bring.

Paul Melmeyer, Director of Federal Policy for NORD, the National Organization for Rare Disorders,joins us to discuss NORD's advocacy activities at the local, State, and federal level. The pioneering organization in support of all patients with rare diseases first introduced the Orphan Disease Act in 1983, the year of its founding, and made those with rare disease a force in the world, and a voice in the medical community. Rare Disease Day is February 28; to learn more about NORD, visit www.rarediseases.org, and www.rarediseaseday.us.

Gerry Tye joins us from Sydney Australia to discuss the changes in the childhood cancer community over the past six years. A father of three boys, Gerry's middle child Talin (age 5) was diagnosed with brain cancer in 2012, passing away shortly thereafter. Beginning in relative obscurity, Gerry's advocacy for other families and their children with cancer evolved into leadership in several advocacy groups with global reach. Gerry discusses the reality of his own experience as well as the triumphs and challenges in continued advocacy work.

A long-time advocate for children with cancer, Paul Miller of Littleton, CO shares with us his story of advocacy through fundraising events, routinely donating blood, supporting groups, connecting people, and how these activities have finally evolved into a bid for his State Legislature. Catalytic to this quantum leap was interacting with lawmakers on Capitol Hill, their staff, and the challenge of making a meaningful impression to raise sufficient awareness for further action.

Ann Graham, CEO of MIB Agents--Make-It-Better-Agents--and osteosarcoma survivor, joins us to discuss the great strides in improving outcomes for osteosarcoma patients which her organization accomplishes as they move forward. The FACTOR Conference began last year in 2017 and was enormously successful in bringing top oncologists, clinicians, patient families and advocates together to improve research funding strategies, exploring new directions in research, and expanding the scope of their mission in caring for osteosarcoma patients. On the eve of the 2018 FACTOR Conference, this deadly disease continues to affect approximately 800 children per year; it is ruthless in its action and tragic in effect on the afflicted and their families. Key to the discussion is the urgent need for greater awareness of the inadequacy of the medical research industry to adequately address the needs of the pediatric patient population with cancer.

Shane and Shawnee Doherty discuss frankly their experience with their son Hollis who was diagnosed with DIPG in March of 2016. DIPG, diffuse intrinsic pontine glioma, is for all practical consideration a death sentence. The Doherty family showed an extraordinary solidarity out of the gate to endure the experience in the hope of making the most possible wonderful days for their son, and choosing treatment plans accordingly. All treatments being experimental, see how this family navigated murky and uncertain waters to provide an exceptional quality of life for their son while he was here. Their dedication to hope continues in their support of cutting edge research into DIPG genomics with TGen and PNOC.

Two-time cancer survivor Steven Giallourakis joins us with his mother Angie to share their experience which inspired the Steven G. AYA Cancer Research Fund in Avon Lake, Ohio. Angie Giallourakis is President of the organization which has programs in wellness, education, research and advocacy for young people with cancer.

"AYA" is an anacronym for "Adolescents-Young Adults", a patient population faced with unique challenges including inadequate research funding, poor prognosis rates, and lingering medical issues for survivors.

Angie's work has developed strongly into an exploration of healing and holistic living and wellness practices for patients and their families, while Steven and his advocacy for young people with cancer remains the inspiration and driving force of their organization.  Steven lives with the same challenges facing many other survivors; his experience speaks to the importance of the STAR Act and other similar pieces of legislation needing greater public awareness and support in US Congress.   Candidly, Steven shares with us some of his own personal experiences with loss which inspire him on a daily basis to fight for other young people with cancer.