Building The Noise with Steve Van Wormer: EPISODE 015

After losing his son Lucas to pulmonary hypertension, Steve Van Wormer turned unimaginable grief into a global mission. Today, his work helps patients and families find answers, community, trusted resources, and hope.In this episode of Building the Noise, Matt Toresco speaks with Steve of phaware global association (phaware®) about the diagnostic journey that changed his family’s life and the legacy that continues to help thousands.Lucas was four years old when his health began declining. After months of being treated for asthma, a substitute pediatrician ordered a chest X-ray and discovered that his heart was enlarged. That unexpected finding led the family to UCLA Mattel Children’s Hospital and began a 14-year journey with pulmonary hypertension.Steve explains why pulmonary hypertension is often misdiagnosed, why patients may see several doctors before receiving answers, and why families must trust their instincts when something still feels wrong.He also shares how phaware® uses storytelling, technology, and global collaboration to support the pulmonary hypertension community. Through more than 600 episodes of the Aware That I’m Rare podcast and the HeartWorks app, Steve and his team connect patients with lived experiences, medical experts, clinical-trial information, health-tracking tools, and practical resources.The conversation closes with Lucas’s continuing legacy, including his artwork, the Hearts for Lucas project, and the people around the world who still share how he changed their lives.In this episode, you’ll learn: Why pulmonary hypertension can be mistaken for asthma  How one chest X-ray changed Lucas’s diagnostic journey  Why patients should trust their instincts and seek another opinion  How storytelling helps rare-disease patients feel heard  What Steve learned from more than 600 patient conversations  How the HeartWorks app supports patients around the world  Why clinical trials remain essential to medical progress  What effective partnerships between advocacy groups and industry require  How Lucas’s art and life continue to inspire others  Why a pulmonary hypertension diagnosis is not necessarily a death sentence today Rare-disease patients can spend months or years searching for the correct diagnosis. Steve’s story shows why listening to patients, questioning incomplete answers, and connecting families with experienced specialists can change the course of a life.It is also a powerful example of turning grief into purpose. By preserving patient stories and making reliable resources easier to access, Steve is ensuring that Lucas’s impact continues to reach families worldwide.Subscribe to Building the Noise for more conversations about patient advocacy, rare disease, and healthcare innovation. Share this episode with someone who needs to hear it, and leave a rating or review to help more listeners discover these important stories.#PulmonaryHypertension #PatientAdvocacy #RareDisease #phaware® #CaregiverSupport #PatientStories #HealthcareInnovation #BuildingTheNoiseSupport the showBuilding the Noise with Matt Toresco