Losing His Son Gave Him a Mission to Help Thousands with Steve Van Wormer

A father’s worst loss became a mission to make sure patients with pulmonary hypertension are heard, informed, and never left to fight alone. After losing his son Lucas, Steve Van Wormer transformed grief into global patient advocacy helping thousands of families find support, trusted information, and hope. In this episode of Building the Noise, Matt Toresco speaks with Steve Van Wormer of phaware global association (phaware®) about Lucas’s pulmonary hypertension journey, the medical clue that led to his diagnosis, and the lasting legacy that continues to inspire patients around the world. About the Guest and Topic Steve Van Wormer manages phaware global association (phaware®) and is the creator and executive producer of the Aware That I’m Rare podcast. Through more than 600 patient, caregiver, and medical-expert stories, he has helped raise global awareness of pulmonary hypertension and make complex medical information easier to understand. Steve shares how Lucas was initially treated for asthma until a substitute pediatrician ordered a chest X-ray and discovered an enlarged heart. That unexpected finding led the family to specialists at UCLA Mattel Children’s Hospital and began a 14-year journey with pulmonary hypertension. Key Takeaways 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 The importance of finding a pulmonary hypertension expert center How storytelling helps isolated patients feel understood What Steve learned from more than 600 patient interviews How the HeartWorks app connects patients with education, tools, news, and clinical trials Why patient participation is essential to medical research How Lucas’s art and advocacy continue to inspire others Why a pulmonary hypertension diagnosis is not necessarily a death sentence today Why This Matters Many pulmonary hypertension patients visit multiple doctors before receiving the correct diagnosis. Steve’s story is a powerful reminder that patients and caregivers must continue asking questions when the explanation they receive does not match what they are experiencing. It is also a story about turning loss into lasting impact. Through phaware®, patient storytelling, technology, and the Hearts for Lucas project, Steve is ensuring that Lucas’s voice continues to reach families around the world. What part of Steve and Lucas’s story stayed with you most? Share your thoughts in the comments. Subscribe to Building the Noise for more conversations about patient advocacy, rare disease, healthcare innovation, and the power of the patient voice. If this episode helped you, please like it, share it with someone who needs it, and watch another patient-advocacy conversation on the channel. #PulmonaryHypertension #RareDisease #PatientAdvocacy #CaregiverSupport #phaware® #RareDiseaseAwareness #PatientStories #BuildingTheNoise