Episodes

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 ...

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...

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”...

The Medication Failed Me. I Didn't Fail the Medication. | Abigail Johnston, JD | Building the Noise Podcast What if we've been placing the burden on patients instead of the disease? In this episode of Building the Noise, Matt Toresco sits down with Abigail Johnston, JD attorney, metastatic breast cancer advocate, and co-host of Live From Stage IV for a deeply honest conversation about resilience, self-advocacy, and the language we use in healthcare. After being diagnosed with stage IV metasta...

WHAT 20 SURGERIES TAUGHT ME ABOUT LIFE Most people would be broken by 20 surgeries. Matt Hay lost his hearing, faced brain tumors, endured facial paralysis, and spent years navigating a rare disease that affects only a tiny fraction of the population. Yet today, he calls himself one of the luckiest people in the world. In this powerful conversation, Matt shares the lessons he learned through adversity, the moment that transformed him from a patient into a patient advocate, and why sufferi...

Most people only see the diagnosis. They don’t see what chronic illness quietly takes from someone’s identity, relationships, confidence, and everyday life. In this powerful episode, patient advocate Shelley Gerson shares her journey from surviving one of healthcare’s darkest moments to becoming a voice for patients inside the biotech industry itself. From being told “women don’t have hemophilia” to helping shape patient-centered healthcare programs, Shelley opens up about what patients truly ...

Why are patients losing trust in the healthcare system and who’s actually listening to them anymore? In this episode, healthcare advocate Brandon Macsata joins us for a raw and honest conversation about patient advocacy, the failures of modern healthcare, insurance denials, AI in medicine, HIV activism, and why patients are still being excluded from decisions that directly impact their lives. Brandon has spent over 30 years fighting for patients at the intersection of healthcare policy, HIV a...

What if life-saving medicine already exists… but patients still can’t get it? In this episode, Sanofi’s Eric Racine breaks down the real crisis in healthcare and it’s not innovation. It’s access. From personal tragedy to leading patient advocacy at one of the world’s largest pharmaceutical companies, Eric shares why millions of patients still fall through the cracks and what needs to change. Eric Racine is a global leader in patient advocacy at Sanofi, with deep experience across healthcare s...

What if your diagnosis wasn’t the end… but the beginning? After being diagnosed with HIV, everything changed but not in the way you might think. This powerful story is about finding purpose, strength, and a new life when it felt like everything was over. Sometimes the hardest moments become the turning point. We dive into: Why patients feel ignored and unheard How pharma and healthcare systems lose trust The hidden struggles in rural healthcare Why community-based care is the real solutio...

Our goal is to help patients navigate the complex and often confusing world of the US healthcare system. In each episode, we discuss important topics, such as how to choose a healthcare provider, how to understand your insurance coverage, & how to advocate for yourself as a patient. We also interview healthcare experts and patients to provide a range of perspectives on these topics. Building the Noise will also provide transparency into the many different elements of the healthcare system inclu...

We sit down with Wendy Erler of Sarepta Therapeutics to understand how she developed her passion for patient advocacy, the value of engaging the patient voice and the need for the industry to engage patient communities further to maximize the impact of their lived experience. Building the Noise with Matt Toresco

In this introductory episode, Matt Toresco introduces his audience to what they can expect from the podcast, why he chose to start one, what he hopes to accomplish in building the noise, & what is to come! Building the Noise with Matt Toresco