A Legacy of Love and Hope: Julianna Sayler Foundation

Stacie Sayler of Walla Walla Washington tells the story of a happy family of 5 on a small farm, Eric Sayler the father is a pastor, and mom home-schools her children.  One day everything changed when Stacie noticed her daughter’s eye was not tracking properly. Julianna was diagnosed shortly thereafter…

Continue reading

“Lighten Our Darkness”: Two Moms Advocate for Others from Life’s Most Tragic Loss

Kirsten Finley and Jamie Franzini, both coincidentally from the same Congressional District in Florida–that of Rep. DeSantis (R-FL-6)–discuss their recent and tragic losses and resulting action in advocacy for children with cancer to inspire greater awareness for the perilous situation so many families find themselves in every day in the…

Continue reading

Hike 4 Pennies: Uniting the Childhood Cancer Community

Ginny McLean, Communications and Outreach Director for Swifty Foundation joins us to discuss the Hike 4 Pennies program with hiker Erick Montgomery who has taken on the challenge of the Pacific Crest Trail, from Tijuana, Mexico to the Canadian border to raise funds for urgently needed pediatric brain cancer research.…

Continue reading

STRAIGHT TALK with the Fachons about Neil’s Incredible DIPG Journey

Both parents Dean and Wendy Fachon join us to share the story of their son Neil Fachon’s diagnosis of DIPG, one of the deadliest pediatric brain cancers. Their journey included the hope of an experimental treatment at the Burzynski Clinic near Houston, TX, and what it was like to endure…

Continue reading

What We Do when there are NO OPTIONS, with Melany Knott

What would you do if your doctors provided no solutions for your child, when nowhere in your country was hope for survival inferred by treatment? Melany Knott tells us about her daughter Kaisey who is currently 17 months out of a diagnosis of DIPG, diffuse intrinsic pontine glioma, for which…

Continue reading

Zoe’s Butterfly Foundation, Part I

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…

Continue reading

Ken Bettencourt and 10,000 mi for Heroes and Angels

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…

Continue reading

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…

Continue reading

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…

Continue reading

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…

Continue reading