From Heartbreak to Advocacy: A Mother's Fight for Inclusion with Victoria Strong

Feb 1, 2024

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In this episode, I am joined by Victoria Strong, a mother whose journey epitomizes strength, resilience, and how to turn challenges into purpose and meaningful change. A mom of three, Victoria's reality was rocked when her 6-month-old daughter Gwendolyn was diagnosed with a rare terminal illness: spinal muscular atrophy (SMA) type 1. Determined to find cures and treatments in the face of a hopeless prognosis, Victoria and her husband Bill founded the Gwendolyn Strong Foundation (GSF) from Gwendolyn's hospital bedside. Their mission was clear: to take action in the face of adversity and exhaust every possibility to save their daughter's life. Over Gwendolyn's 7 beautiful years, GSF became a driving force for getting federal legislation passed to streamline clinical trials for rare diseases, securing federal endorsement for SMA newborn and carrier screening, and working to eliminate insurance lifetime caps and pre-existing condition penalties.

We also discuss Gwendolyn's Playground, an initiative launched after Gwendolyn's passing that (after successfully raising $6 million in funding!) is in the process of building the first fully inclusive destination playground in Santa Barbara. Victoria's resilience and accomplishments in the face of adversity make this an inspiring and empowering episode for anyone facing a daunting diagnosis or even holding a seemingly impossible dream in their heart. Nothing is impossible when we are motivated by LOVE.

Links

Never Give Up - The Gwendolyn Strong Foundation Website: https://nevergiveup.org/

Never Give Up on Instagram: https://www.instagram.com/nevergiveuporg

Gwendolyn's Playground on Instagram: https://www.instagram.com/gwendolynsplayground/

Learn More About the Gwendolyn Strong Foundation: https://vimeo.com/788139886