Building the Noise Podcast

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

Dr. Rachel Brem discovered her own breast cancer at just 37 while testing ultrasound equipment. That life-changing moment strengthened her mission to help women understand their risks, detect cancer earlier, and advocate for the care they deserve. In this episode of Building the Noise, Matt Toresco speaks with Dr. Rachel Brem, breast imaging expert, breast cancer survivor, co-founder, and chief medical officer of the Brem Foundation to Defeat Breast Cancer. Dr. Brem explains why breast cancer

What if fixing healthcare started with truly listening to the people most affected by it? In this episode of Building the Noise, Matt Toresco speaks with Jeffrey Lewis, President and CEO of Legacy Health Endowment, about turning community conversations into practical healthcare solutions from $2 prescriptions and free diabetes care to rural specialty clinics, caregiver support, and women’s health programs. Jeffrey explains why meaningful healthcare innovation begins by understanding the “why”...

Patient advocacy is more than fundraising, awareness events, or checking a box. It’s about building meaningful partnerships that turn patient experiences into real healthcare change. In this episode of Building the Noise, Matt Toresco speaks with Susan Hensley about the strategic power of patient advocacy and why patients must have a voice in the decisions that affect their care. Susan shares how patient insights can influence clinical research, healthcare resources, access programs, and innov