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.