Building the Noise Podcast

Her treatment worked. Sally Nix was in remission and walking three miles a day until her health insurance company stopped paying. In this episode of Building the Noise, Matt Toresco speaks with patient-rights advocate Sally Nix about the human cost of health insurance denials, prior authorization, and retroactive payment reversals. After five brain surgeries, five spinal surgeries, multiple sclerosis, autoimmune disease, and severe trigeminal neuralgia, Sally found meaningful relief through IV

For four years, doctors told Bridget Dandaraw-Seritt that she was fine. When someone finally listened, they discovered a surgical screw embedded in her cerebellum and another working its way in. In this episode of Building the Noise, Bridget joins Matt Toresco for a powerful conversation about medical dismissal, chronic illness, patient advocacy, prescription drug access, and the importance of trusting your own body. Living with rheumatoid arthritis, lupus, Sjögren’s syndrome, a rare form of E

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 PH Aware Global Association 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

What if your child’s chance of receiving life-saving newborn screening depended on the state where they were born? Rare disease policy advocate Erin Frey calls this heartbreaking disparity “death by ZIP code.” In this episode of Building the Noise, Matt Toresco speaks with Erin about America’s newborn screening system, the Recommended Uniform Screening Panel (RUSP), and why babies are not necessarily screened for the same conditions in every state. Erin explains how a condition moves from trea

Doctors told Monica Dudley-Weldon that her son might never walk or talk. One night, he unexpectedly said the words she had been waiting to hear: “I love you.” When Beckett was diagnosed with a SYNGAP1-related disorder, he was one of only six identified patients Monica could find. Getting that answer required 19 specialists, a $13,000 genetic test, a 14-week wait, and the willingness to take a chance when success was far from guaranteed. Monica refused to let the diagnosis become the end of Bec

They called type 1 diabetes “type white” a dangerous stereotype that can leave Black patients misunderstood, misdiagnosed, and excluded from critical healthcare conversations. Diagnosed at eight years old with a blood sugar level approaching 600, Shay Webb transformed her experience with type 1 diabetes and rheumatoid arthritis into a career dedicated to clinical research, healthcare policy, and patient advocacy. In this episode of Building the Noise, Shay shares what it was like growing up as