Fly like a Superhero with Smile High Club

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…

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Theodore Lives with Juvenile Batten CNL3 Disease

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…

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NORD Advocates for Rare Diseases

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…

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Global Childhood Cancer Advocate Gerry Tye in Sydney, Australia

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…

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Paul 4 the People: A Personal Journey of Advocacy through Involvement

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…

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FACTOR 2018: MIB Agents Osteosarcoma Mission Full Speed Ahead

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…

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Shane and Shawnee Doherty: The Story behind “Hope through Hollis”

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 considerations a death sentence. The Doherty family showed an extraordinary solidarity out of the gate to endure the experience in…

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Steven and Angie Giallourakis and the Steven G. AYA Cancer Research Fund

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”…

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Portrait of a Mom: Quality of Life and Neuroblastoma, with Sarah Brewer

click to download podcast

Sarah Brewer knows the fear; through years of experience with her son Ben, diagnosed with Neuroblastoma at 2 years of age, her daughter Madeline just born, hers is a story of the most pervasive power of all:  love. Her family changed forever, but love and caring remain intact and reign supreme.

Hearing Sarah’s story of commitment and faith in the face of perilous uncertainty, for so long, is a testament to the preciousness of her son Ben in his brave fight, and to the importance of embracing the best in each moment–and insisting on it.
Sarahs blog documenting Ben’s awesome survival is at www.strongerthanilook.com, a must-read for parents of children with cancer.

The podcast can be found online at:  http://bit.ly/CCTR12-14-17.  (our podcast links are always case-sensitive)

You can listen to live TogiNet radio at www.TogiNet.com.  Childhood Cancer Talk Radio airs every Thursday at 4pm Eastern time, 1pm Pacific.

Taking it to the Hill: DIPG Advocacy Group promotes H.Res.69

December 5, 2017, Washington, D.C.–H.Res.69, the DIPG Awareness Resolution, is a simple House Resolution which raises awareness to the realities of diffuse intrinsic pontine glioma, perhaps the most deadly pediatric brain cancer.  It also raises awareness to general pediatric cancer and brain cancer statistics, the leading cause of death in…

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