She thought she was just another woman with lumps and dismissive doctors until a simple saliva test rewrote her future.

Veronica Tucker’s story rips through complacency: from being told “(the cancer) is on your father’s side, don’t worry”; the gut-punch of a BRCA2 positive result, to the wrenching choices of double mastectomy and hysterectomy before cancer could take hold.

This episode traces the raw, unfiltered emotional moments of fear and hurt when care failed her, and the courageous clarity that followed when she chose prevention over waiting for diagnosis.

Hear how one sorority conversation unlocked access to a compassionate genetic counselor who transformed Veronica trauma into options and action. She exposes how defensive doctors and ignorance about hereditary cancer still cost lives, and why refusing to be passive about risk is the bravest kind of self-advocacy.

Key takeaways:

• Ask for genetic testing: one saliva sample can shift your life from reaction to prevention.
• Build your Spark team: community, counselors, and advocates are essential for making and surviving preventive choices.
• Don’t accept dismissal: push for answers, document interactions, and demand care that treats prevention as urgent.

This is not a gentle patient story. It’s a provocation: know your genes, organize your family, and insist on prevention. Veronica’s journey proves cancer prevention is not theoretical, it’s a series of tough, courageous choices that can save generations.

Meta DESCRIPTION

Listen to this powerful story about how a simple saliva genetic test prevented a cancer diagnosis in a family with a long history of cancer. Veronica Tucker discovered she carried a BRCA2 variant that increased her chances of breast and ovarian cancer. She shares the problems she faced when doctors dismissed her concerns, and why she now speaks up for patients who are afraid to ask questions. Listen to learn why knowing your genetic risks can change everything, how to start family conversations about testing, and how to find people who will support you through prevention choices.

We are honored to speak with Amy Cohen, who made history as the first person with sickle cell disease to run and finish the New York City Marathon. She opens up about her diagnosis, and the pivotal moment in high school when the reality of the disease set in, emphasizing the necessity of pushing through fear and living boldly against external limitations.

Amy frames her marathon finish not as a solitary victory, but as a win for the entire sickle cell community, offering a new narrative of possibility. It also connects to her professional mission as a patient advocate and founder of The Patient Room consultancy, which focuses on bridging the critical trust and information gap between pharmaceutical developers and the patients they serve.

Key Takeaways:

• Learn the three mindset shifts essential for thriving with a chronic illness, moving from limitation to possibility.
• Understand the critical importance of a supportive care team and community in achieving ambitious health goals.
• Discover why policy changes, like cuts to ACA subsidies, directly threaten care access and worsen outcomes for patients even as new therapies emerge.

This is a compelling call to action for protecting the systems that enable precision medicine, and allow all patients to pursue their own finish lines.

META DESCRIPTION

Hear how Amy Cohen, a woman with sickle cell disease, made history by running the New York City Marathon. She shares her story of using a strong mindset and a great doctor's plan to break her own limits. Amy talks about how she trained for years and why her win is a win for all sickle cell warriors. Amy passionately explains why losing ACA health insurance help would hurt people with sickle cell in ways most cannot imagine.

In this episode research geneticist and author Susan Liebman joins us to tell the personal and scientific story behind her memoir The Dressmaker’s Mirror: Sudden Death, Genetics, and a Jewish Family’s Secret.

Susan unpacks generations of silence around heart disease and how sudden deaths and a decades-long family history of dilated cardiomyopathy led her to the discovery of an FLNC gene mutation (a "founder variant" most prevalent in Ashkenazi Jewish families) which revealed both risk and opportunity for preventing sudden cardiac death.

Top 3 takeaways listeners will learn:

• Why dilated cardiomyopathy can be hereditary and how to get free genetic testing to find a treatable genetic variant.
• How precision medicine (including targeted screening, medications, implantable defibrillators, and soon gene editing) can change outcomes in cardiomyopathy — yet fewer than 1% of people with this condition currently receive germline genetic testing.
• Practical advice for starting conversations with family and clinicians, and how applying genetic knowledge can turn family grief into prevention for future generations.

If you or a loved one has been diagnosed with heart failure or idiopathic dilated cardiomyopathy, this episode is a must-listen! It blends gripping storytelling with clear, actionable information about genetic testing, genes associated with heart failure and how knowing can help you gain access to precision medicine that could save lives for generations to come.

META DESCRIPTION

Susan Liebman talks about cardiomyopathy, sudden death and family secrets. Her book is a love letter to family and shows how precision medicine found an FLNC gene mutation that can cause sudden death. Genetic testing can lead to treatments, preventative screenings, and lifesaving choices—yet fewer than 1% of cardiomyopathy patients get tested. We help you build the language and confidence to advocate for a precision medicine approach to your healthcare.

In this powerful episode of Through The Pain, we dive deep into the lived realities behind diagnosis, treatment, and the emotional weight patients often carry in silence.

Too often, patients receive life-altering information without the context, clarity, or support needed to truly understand what’s happening to their bodies. In this conversation, Christelle Salomon and Wunmi Bakare unpack what that gap feels like—from confusion and isolation to the struggle of navigating complex medical systems that weren’t built with patient understanding at the center.

This episode goes beyond science and clinical terminology. It highlights the human experience behind the data: the loneliness of feeling unseen, the frustration of unanswered questions, and the importance of community, communication, and trust between patients and healthcare providers.

We explore why translating complex medical information matters, how advocacy changes outcomes, and what it means to truly listen to patients—not just treat them. This conversation is for patients, caregivers, advocates, clinicians, and anyone who believes healthcare should be rooted in empathy as much as expertise.

If you’ve ever felt overwhelmed after a diagnosis, unsure of what questions to ask, or disconnected from the care process, this episode will resonate deeply. And if you work in healthcare, this is an essential reminder of why understanding lived experience is just as critical as understanding disease.

Watch, listen, and reflect—because real progress begins when patients are heard.

Rome sits down with Stephane Budel, Founding Partner at Decibio, a premier strategy consulting firm dedicated to advancing precision medicine. This conversation aims to demystify the complex world of NGS testing, providing patients, caregivers, and healthcare professionals with a clearer understanding of how these powerful tools are revolutionizing cancer prevention, treatment, and long-term management.

Stephane offers a comprehensive overview of the NGS testing landscape, detailing its various applications from identifying hereditary cancer risks and early detection, to guiding personalized treatment with comprehensive genomic profiling (CGP) and monitoring disease recurrence (MRD testing). They candidly discuss the persistent challenges in NGS adoption, which include lack of insurance coverage, and integrating these technologies into routine clinical workflows, particularly in community settings.

Key Takeaways:

• NGS Transforms Cancer Care: Next-Generation Sequencing is crucial for shifting from a reactive "sick care" model to proactive, precision medicine to prevent cancer. By enabling earlier detection and highly personalized treatments, NGS significantly improves patient outcomes, particularly when cancer is caught in its earliest stages.
• A Spectrum of NGS Tests: Patients have access to various NGS applications throughout their cancer journey, including germline testing for hereditary risk, early detection tests (e.g., multi-cancer early detection blood tests), comprehensive genomic profiling (CGP) for treatment selection, and monitoring (MRD) tests for tracking disease and recurrence.
• The Future of Cancer Care: The integration of AI and multiomics (analyzing DNA, RNA, and proteins) will enhance diagnostic accuracy, personalize therapeutic strategies, streamline clinical workflows, and unlock deeper biological insights, further optimizing patient care in the coming years.

META DESCRIPTION Discover how NGS testing is changing cancer care! DeciBio co-founder Stephane Budel explains precision medicine and how genetic tests help treat and prevent cancer. Learn about different types of NGS tests, like liquid biopsies, and what they mean for you. This episode makes complex topics simple, giving patients and caregivers clear information on how to advocate for your health and understand the future of cancer care with precision medicine. Tune in to empower yourself with knowledge about NGS testing and personalized treatment options. We help you learn the language and build confidence to be a more effective advocate for a precision medicine approach to your healthcare.

This week we sit down with Sara Kavanaugh, the voice behind The Positive Gene Podcast, who shares her deeply personal story as a cancer pre-vivor. Discovering not one, but two gene variants that significantly increased her cancer risk, Sara transformed her fear and anxiety into powerful action. This conversation about genetics redefines what it means to face cancer risks empowered and illuminates how initial anxiety can evolve into profound personal power and a confident approach to healthcare.

Sara details the proactive and life-changing decisions she made using precision medicine. From preventative surgery to tailored screening protocols, all guided by her genetic testing results. We explore why she started her podcast and her dedicated advocacy work, emphasizing the critical role of genetic counselors and supportive communities like FORCE in navigating complex health information and fostering true healthcare ownership. This isn't just about her story; it's a blueprint for others to activate their personal power and confidence with precision medicine.

LINKS

• ⁠Her website⁠
• ⁠podcast links⁠
• ⁠NSGC.ORG find a GC⁠
• ⁠FORCE⁠
• Guidelines for screening for variant?
  • ⁠CDC Managing Risk for Cancers Related to Lynch Syndrome⁠
  • ⁠FORCE Gens by Syndrome⁠
  • ⁠FORCE CHK2 screening recommendations⁠

In this special New Year's episode, host Rome Madison steps into the interviewee chair, sharing the driving force behid his two-decade career in precision medicine with DNA Today Podcast host Kira Deneen. Rome recounts his unexpected entry into the field, and a self-taught pursuit of molecular science that led him to market groundbreaking cancer diagnostics.

Rome's reveals that his passionate mission to expand patient access was birthed when his own father was diagnosed with colorectal cancer. This coupled with the serendipitous fact that his father's surgeon and the hospital where he received care were also his clients, which ensured his father received the genomic insights few patients got access to at the time. Rome’s father today is a 20-year colorectal cancer survivor, which fuels his relentless fight to eliminate obstacles for people to acces genetic and genomic testing today.

Kira Dineen is a certified genetic counselor the host and executive producer of DNA Today, a weekly podcast that educates and engages listeners about genetics. Kira has produced over 300 episodes of DNA Today, interviewing experts in the field of clinical genetics and has won the Best 2020, 2021, and 2022 Science and Medicine Podcast Awards.

Listen for these powerful takeaways:

• The Power of Personal Experience: Rome's direct involvement in his father's colorectal cancer surgery and genomic testing profoundly solidified his lifelong mission to expand patient access to genetic and genomic testing.
• Persistent Access Barriers: Despite two decades of scientific advancement in precision medicine, significant hurdles such as outdated reimbursement policies, lack of provider awareness, and inherent biases continue to prevent equitable access.

The Imperative of Self-Advocacy: Rome emphasizes that accessible information and patient empowerment are crucial for navigating the complex healthcare system, enabling individuals to advocate for and ultimately receive personalized, genome informed care.

We’re taking a look back at the podcast's remarkable growth and engagement throughout 2025. Nearly 5000 podcast downloads, listeners in 59 countries and counting, and the expanding reach across platforms like YouTube and LinkedIn is helping us to reach more people who need to learn the language of precision medicine and build confidence to be more effective advocates for their healthcare. Rome also unveils exciting new website features designed to make this information more accessible, including a glossary of terms, a list of patient advocacy groups, and an advanced search function to find topics most important to you.

Adding a personal touch, Rome introduces his daughters and podcast contributors, Marloh and Zoi, offering listeners a chance to get to know the family behind the mission, and even includes a brief cameo from their beloved dog, Cyrus. The episode culminates with an inspiring interview featuring former NFL defensive lineman Tony Savage, a male breast cancer survivor and BRCA2 variant carrier, whose powerful story underscores the importance of proactive genetic testing to understand cancer risks. Before the interview, Rome outlines ambitious goals for the podcast's future, aiming to further expand its impact and advocate for greater integration of genetic insights in healthcare:

1. Syndicate Genetics for Healthcare Podcast episodes into Cancer Center Waiting Rooms/Hospital Wards – we want to repurpose our video content, particularly the patient testimonies, to be featured in cancer center waiting rooms and hospital cancer wards. These real-life stories and educational segments can engage, inform, and inspire patients during their healthcare journeys, turning solemn waiting times into opportunities for learning and connection.
2. Advocate for NFL's Crucial Catch Campaign to Include Genetic & Genomic Testing - This initiative would emphasize the importance of hereditary cancer testing, whole genome sequencing, and identifying high-risk variants early to inform proactive screening, prevention strategies, and ultimately, save lives by catching diseases when they are most treatable.

If you have connections within healthcare systems or ideas on how to license or syndicate our episodes AND/OR contacts within the NFL, or experience in large-scale health advocacy campaigns, we'd love to hear from you!

Send us an email at info@geneticsforhealthcare.com or DM us on any of our social medial platforms.