Building the Noise Podcast

You can eat well, exercise, and do everything right and still get breast cancer. So how do you understand your risk and speak up when your concerns aren’t being heard?

Clare Dougherty, CEO of the Brem Foundation to Defeat Breast Cancer, joins Matt Toresco on Building the Noise to discuss breast cancer risk, early detection, and patient self-advocacy.

Clare shares why negative genetic testing wasn’t the whole picture in her own risk assessment. She also explores confusing screening guidance, the costs of diagnostic testing, and how something as simple as transportation can determine whether a woman gets to her appointment.

In this episode, we explore:
• Why breast cancer risk goes beyond family history.
• How to prepare better questions for your healthcare provider.
• How the B Fund and Wheels for Women help address access barriers.
• Why speaking up and seeking support matter when you feel unheard.
• How patient stories and advocacy can help drive policy change.

Understanding your breast health shouldn’t mean navigating uncertainty alone. This conversation highlights the education, practical support, and advocacy that can help women feel more informed and supported.

Learn more about Clare and the Brem Foundation:
https://www.bremfoundation.org/team
https://www.bremfoundation.org/

Explore the CheckMate breast health quiz:
https://breastquiz.bremfoundation.org/

Find breast health and early detection resources:
https://www.bremfoundation.org/breasthealth

Listen to the full episode, subscribe to Building the Noise, and share this conversation with someone who would value it. Leave a rating or review to help more listeners discover the show.

What needs to change first: clearer screening information, affordable testing, or making sure women are heard?

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She needed answers. Instead, she was told to wait until she got worse.

For about two years, Tiffany Westrich-Robertson lived as a “mystery patient,” experiencing worsening symptoms without a clear diagnosis. At one point, she was sleeping about 16 hours a day. Before she even knew what was wrong, she made a promise: she would dedicate her life to helping others avoid the same experience.

In this episode of Building the Noise, Tiffany joins Matt Toresco to share how that promise led her to found AI Arthritis and why patient experiences must help shape healthcare decisions.

Together, they explore the emotional impact of delayed diagnosis, rebuilding your identity with chronic illness, and turning lived experience into evidence that influences research and policy.

The conversation also tackles prescription drug affordability boards (PDABs), upper payment limits, and Tiffany’s concerns about insurance-driven medication switching. When the healthcare system saves money, does that mean patients pay less or gain better access to the treatments they need?

In this episode, you’ll hear:

• How an awareness bracelet sparked connections with patients around the world.
• Why receiving a diagnosis can bring both relief and an identity shift.
• How collecting patient experiences can reveal patterns that individual accounts cannot.
• Why drug affordability requires looking at insurance coverage and out-of-pocket costs.
• How patients can contribute to change without knowing every policy term.

Tiffany’s message is clear: your experience matters. Sharing it can help improve what happens to the next person searching for answers.

Listen to the full episode, subscribe to Building the Noise, and share this conversation with someone who needs to feel heard. Leave a rating or review on your podcast app to help more listeners discover the show.

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Years after a DUI crash that killed two people, Martin Lockett received a message from a victim’s daughter that he never expected. She had seen the work he was doing and thanked him for keeping a promise he made at sentencing.

On Building the Noise, Martin joins Matt Toresco to talk about the crash, the lives of the people who died, and his path through addiction recovery and incarceration. He shares how he became a substance abuse counselor and why he now brings mental health and substance use support into trusted community spaces.

Martin also explains how his team works with barbers, hairstylists, and young people to start conversations that can be difficult to have at home or in a clinic.

This is a conversation about accountability, recovery, and what it means to keep showing up for others over a lifetime.

Listen to the full episode, subscribe to @AdvocacyIntelNetwork, and share it with someone who would value this conversation. If the show speaks to you, please leave a rating or review.

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What if health insurers deny care because they know most patients will never appeal?

In this episode of Building the Noise, Matt Toresco speaks with Marcus J. Hopkins, founder and executive director of the Appalachian Learning Initiative, about the forces preventing Americans from accessing the care they need.

Marcus explains how insurance denials, complicated appeal processes, limited health literacy, poverty, geography, and incomplete data can leave patients behind. He also examines the connections between education and health, the barriers facing rural communities, and what Appalachia’s opioid and HIV crises reveal about systemic neglect.

You’ll learn:

•  Why many patients never appeal an insurance denial 
•  How challenging a denial can sometimes change the outcome 
•  Why health literacy directly affects patient care 
•  How education, poverty, and health are connected 
•  Why rural communities face additional barriers to treatment 
•  How incomplete data can make vulnerable populations invisible 
•  What Appalachia’s public health challenges reveal about America’s healthcare system 

Access to healthcare requires more than an insurance card. Patients must also understand medical information, navigate complicated systems, reach qualified providers, and know how to advocate for themselves when care is denied.

Do you believe insurance denials are legitimate safeguards, profit-driven barriers, or a combination of both?

Subscribe to Building the Noise for more honest conversations about patient advocacy, healthcare access, and public health. Share this episode with someone who needs to hear it, and leave a rating or review to help more listeners discover the show.

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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 IVIG. Six months later, her insurer stopped covering the treatment even though it was working.

Sally shares how she challenged major insurance companies, communicated directly with executives and medical directors, and learned to navigate appeals, claim files, ERISA protections, regulatory agencies, and complex medical documentation. What began as a fight for her own care became a national mission to help other patients advocate for themselves.

In this episode, you’ll learn:

• How retroactive insurance denials affect patients
• Why patients should maintain copies of their medical records
• What an insurance claim file is and why you may want yours
• How to document and challenge a coverage decision
• Why knowing who regulates your health plan matters
• How prior authorization can interfere with medical decisions
• What employers should know about self-funded health plans
• Why delayed or denied care has a lasting human cost

An insurance denial is never just paperwork. It can affect a patient’s health, finances, independence, relationships, and future.

This conversation raises an urgent question: Who should have the final say over medically necessary treatment the patient’s physician or the insurance company?

Subscribe to Building the Noise for more honest conversations about patient advocacy, healthcare access, and the power of the patient voice.

Share this episode with someone navigating an insurance denial, and leave a rating or review to help more patients, caregivers, and advocates discover the show.

#PatientAdvocacy #HealthInsurance #InsuranceDenial #PriorAuthorization #PatientRights #HealthcareReform #ChronicIllness #BuildingTheNoise

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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 Ehlers-Danlos syndrome, mast cell activation syndrome, and related complications inspired Bridget to become a determined healthcare policy advocate. Today, she helps patients understand legislation, share their stories, communicate with lawmakers, and fight for policies that protect their access to care.

Bridget also explains how pharmacy benefit managers, rebates, formularies, prescription drug affordability boards, and state healthcare policies can influence whether patients receive the medications and support they need.

In this episode, you’ll learn:

• What happened after Bridget’s concerns were dismissed for four years
• How to advocate for yourself when a doctor does not listen
• Why patients should not be afraid to seek another medical opinion
• How PBMs and rebates can influence medication access
• Why some drug-pricing policies may create unintended consequences
• How patients and caregivers can influence healthcare policy
• Why community is essential for people living with chronic illness
• How healthcare organizations can amplify patient voices without speaking over them

Patients are the reason the healthcare system exists, yet their perspectives are often missing from decisions about treatment, coverage, medication access, and public policy. Bridget’s story is a powerful reminder to trust yourself, stay persistent, find community, and use your voice.

Subscribe to Building the Noise for more conversations about patient advocacy and healthcare change. Share this episode with someone who needs to hear that their voice matters, and leave a rating or review to help more listeners discover the show.

What should patients do when they know something is wrong but their concerns keep being dismissed?

#PatientAdvocacy #PatientVoice #ChronicIllness #HealthcarePolicy #MedicalDismissal

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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 #BuildingTheNoise

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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 treatment approval to federal recommendation and then through individual state review processes a journey that can take years. For rare disease families, these delays may mean losing the opportunity to diagnose and treat a child before irreversible disease progression begins.

They also discuss the realities facing public-health laboratories, the future of genomic newborn screening, and why meaningful healthcare change often begins at the state level. Erin shares how successful advocates build coalitions through listening, relationships, persistence, and honest conversations.

You’ll learn:

• Why newborn screening panels differ from state to state
• What the Recommended Uniform Screening Panel means
• Why screening delays can stretch toward 10 years
• How early diagnosis can improve rare disease outcomes
• Why public-health laboratories need more resources
• How state legislation can create national change
• What genomic newborn screening could mean for families
• Why advocacy requires coalitions, not individual voices
• How Erin transformed personal challenges into a purpose-driven career

For rare disease families, every minute matters. Closing the newborn screening gap requires more than scientific innovation it requires better policy, stronger public-health systems, and collaboration among families, advocates, healthcare professionals, industry leaders, and lawmakers.

Learn more about the State Zebra Network and its work supporting state-level rare disease advocacy:

https://statezebranetwork.org

Subscribe to Building the Noise for more conversations about patient advocacy, rare disease, and healthcare policy. Share this episode with someone who needs to hear it, and leave a rating or review to support the show.

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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 Beckett’s story.

A former science teacher, she founded the first organization dedicated to advancing SYNGAP1 research, awareness, and family support. Her work helped establish a patient registry, natural history research, an ICD-10 code, and new collaborations among families, researchers, biotechnology companies, and policymakers.

That journey eventually led Monica into law, health policy, biotech strategy, and chemical and biological defense work with the federal government.

IN THIS EPISODE, YOU’LL LEARN:

•  Why Monica borrowed $13,000 for a genetic test with only a 20% chance of finding an answer 
•  How Beckett became one of the earliest identified SYNGAP1 patients 
•  How one family helped create an international rare disease movement 
•  Why patient registries and natural history studies matter to drug development 
•  How patient priorities can differ from what researchers expect 
•  Why many rare disease nonprofits need more sustainable business models 
•  How patient data can responsibly support future research 
•  Why community conflict can drive away researchers and biotech companies 
•  How families can recognize unsupported treatments and questionable medical claims 
•  How rare disease advocacy prepared Monica for biotechnology and national defense 
•  What personal loss, faith, and starting again taught her about leadership 

WHY THIS MATTERS:

Rare disease families often live with immediate challenges including seizures, behavioral symptoms, intellectual disability, and uncertainty while treatments can take years or even decades to develop.

Monica’s story demonstrates why patients and caregivers must have a meaningful voice in deciding what research addresses first. It also shows what can happen when lived experience is combined with science, business, law, policy, and persistent advocacy.

A diagnosis can describe a condition, but it does not have to define a child’s future.

CHAPTERS:

00:00 Doctors Said He Would Never Talk
 01:31 Meet Monica Dudley-Weldon
 03:05 From Patient Advocacy to National Defense
 08:39 Nineteen Specialists and a $13,000 Decision
 10:17 A Genetic Test With a 20% Chance
 11:35 Beckett Becomes Patient Number Six
 12:42 Building a SYNGAP1 Research Movement
 15:55 Turning a 30-Year Timeline Into Eight
 22:07 Why Pharmaceutical Funding Is Complicated
 24:29 A New Model for Rare Disease Research
 28:11 Why Rare Disease Data Is So Valuable
 31:30 Hearing What Beckett Would “Never” Do
 34:00 The First Time Beckett Said “I Love You”
 37:02 Building Something That Can Survive
 39:37 When Politics Blocks Medical Innovation
 43:22 Identifying Charlatans and Unsupported Treatments
 46:56 A Classroom Experiment Inspires Real Research
 50:13 What Patients Need Before a Cure
 53:08 What Monica Would Tell Her Younger Self
 55:50 Choosing Triumph Over Tragedy

Subscribe to Building the Noise for more conversations about healthcare, biotechnology, patient advocacy, public policy, and the people working to improve broken systems.

Listen to the full episode, share it with a parent, caregiver, researcher, or advocate who needs to hear it, and leave a rating or review to support the show.

SYNGAP1, rare disease, rare disease advocacy, patient advocacy, genetic disorders, genetic testing, Monica Dudley-Weldon, SYNGAP1 research, patient-led research, special needs parenting, intellectual disability, epilepsy, biotechnology, healthcare policy, drug development, patient data, nonprofit leadership, medical research, national defense, Building the Noise

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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 one of the only Black girls with type 1 diabetes in many healthcare and advocacy spaces. She explains how racial assumptions can affect diagnosis and treatment, why lived experience is a valuable form of expertise, and how patients can advocate for themselves in ways that feel natural and effective.

Shay and Matt also discuss why pharmaceutical companies must involve patients earlier, how the lack of diversity in clinical research affects trust and outcomes, and why healthcare resources should be brought directly into underserved communities.

IN THIS EPISODE, YOU’LL LEARN:

•  Why type 1 diabetes was sometimes described as “type white” 
•  How racial assumptions can contribute to diabetes misdiagnosis 
•  What Shay experienced when she was diagnosed at eight years old 
•  How patients can use their voices effectively 
•  Why lived experience cannot be replaced by a presentation or textbook 
•  What pharmaceutical companies still get wrong about patient advocacy 
•  Why Black patients remain underrepresented in clinical research 
•  How healthcare organizations can earn community trust 
•  Why patients must be treated as more than diagnoses or data 
•  Why a diagnosis is “a word, not a sentence” 

Patient advocacy and health equity cannot be separated. Different patients face different barriers, and giving everyone the same resources does not guarantee equitable access to excellent care. Meaningful change begins when healthcare organizations listen to patients, involve them early, and build lasting relationships within their communities.

Subscribe to Building the Noise for more honest conversations with patients, advocates, researchers, and healthcare leaders.

Share this episode with someone who needs to hear that their diagnosis does not define them. Please leave a rating or review to support the show and help more listeners discover these important conversations.

What must healthcare address first: racial bias, patient representation, or community trust?

#Type1Diabetes #PatientAdvocacy #HealthEquity #BlackHealth #DiabetesAwareness #ClinicalResearch #BuildingTheNoise

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