This special, urgent episode of The Positive Gene Podcast steps outside our normal publishing schedule because the stakes could not be higher. Congress is considering the Patent Eligibility Restoration Act (PERA) — a bill that would once again allow companies to patent human genes and biomarkers, reversing the 2013 Supreme Court decision that made genetic testing more accessible, competitive, and affordable.

Host Sara Kavanaugh, a Lynch Syndrome (MSH6) and CHEK2 previvor, sits down with Lisa Schlager, FORCE’s Vice President of Public Policy, to break down:

What PERA is

Why it poses a threat to patients, families, and future research

How gene patents have harmed patients in the past

What returning to a monopoly system would mean for access, cost, and innovation

Why Congress is considering this right now

And — most importantly — what you can do in minutes to help stop it

If PERA becomes law, a single company could control testing for specific genes, raise prices, restrict access, block research, and impact the lives of millions of families navigating hereditary cancer risk and rare diseases.

This issue is time-sensitive, with Congress heading into holiday recess.

Your voice is needed now.  See links to FORCE's advocacy action center to easily email your legislators!

FORCE's Advocacy Action Center - Email Your Legislators

FORCE's Policy & Advocacy Page - Learn more here

Find Your Congressional Legislator here

Oppose PERA. - Prewritten Social Posts from FORCE

Email Lisa Schlager: [email protected]

Positive Gene Podcast Blog - read full transcript here

In today’s conversation, we dig into the part of cancer conversations that rarely makes headlines -  hereditary cancer risk, prevention, and the systemic barriers that keep people from getting the care they need.

My guest, Jennifer Thompson, MS, CGC is a board-certified genetic counselor and founder of HealthyGene, a digital genetic counseling clinic designed to remove barriers to hereditary cancer risk assessment. She specializes in cancer genetics, patient advocacy, and improving early access to testing through education and telehealth.

Together, we unpack:

If you’ve ever felt like the conversation about cancer stops with treatment instead of starting with prevention, this episode is your reminder:

Knowledge is power.

It’s never too early to ask questions, learn your family history, and take steps to protect yourself and the people you love.

In this episode of The Positive Gene Podcast, Maddie Williamson, a genetic counselor and BRCA1 carrier, joins host Sara Kavanaugh to discuss what it means to navigate hereditary cancer risk as a member of the LGBTQ+ community.

Drawing from both personal experience and professional expertise, Maddie shares the challenges and insights that come with balancing genetic risk, identity, and access to care. The conversation explores how connection, understanding, and empathy can make a lasting difference in the hereditary cancer journey — for patients, families, and providers alike.

Personal Story & Perspective — Maddie’s journey as a genetic counselor and BRCA1 carrier

Barriers to Inclusive Healthcare — Finding affirming providers and safe medical spaces

Insurance & Access — Navigating coverage gaps and coding complexities

Family, Identity & Genetic Testing — How estrangement and chosen family affect care

Representation & Research — SOGI data gaps and why inclusive study design matters

From Allyship to Action — What providers and advocates can do to better support LGBTQ+ patients

Maddie Williamson — Instagram: @MaddieLucy27

National LGBT Cancer Network — Affirming provider directories, support groups, and clinician toolkits. cancer-network.org

OutCare Health — U.S. directory of culturally competent providers for LGBTQ+ patients. outcarehealth.org

Callen-Lorde Health Center — LGBTQ+-focused healthcare and advocacy based in New York. callen-lorde.org

GLMA – Health Professionals Advancing LGBTQ Equality

LGBTData.com — Inclusive public health data and SOGI visibility.

NCCN Language Guidance — Sensitive, Respectful, and Inclusive Language for Oncology -  NCCN Guidance PDF

Advancing Health Equity for LGBTQ+ Identifying Patients with Cancer (NCCN Infographic)

Disclaimer:

In this moving episode of The Positive Gene Podcast, host Sara Kavanaugh sits down with author Tiffany Graham Charkosky, whose forthcoming memoir Living Proof: How Love Defied Genetic Legacy shares her deeply personal journey through Lynch Syndrome, family loss, and the power of love and resilience.

Tiffany reflects on how discovering her genetic risk reshaped her understanding of health, motherhood, and legacy and how she’s teaching her sons to live with gratitude and joy in the face of uncertainty. Together, Sara and Tiffany explore what it means to build a life rooted in hope, connection, and purpose, even when our DNA tells a different story.

In this episode, Tiffany and Sara discuss:

The moment Tiffany learned she carried Lynch Syndrome and how it changed everything

Balancing genetic risk with parenting, openness, and protecting childhood

How love guided Tiffany’s preventative health decisions

The emotional parallels between grief, forgiveness, and self-discovery

Why resilience isn’t about strength alone - it’s about meaning and connection

What it means to leave behind a legacy of love

Whether you’re navigating your own hereditary cancer risk or simply searching for inspiration to live more fully, this conversation reminds us that our genes may shape us, but they don’t define us.

Guest Bio:

Connect with Tiffany:

Connect with Sara:

Earlier this year, musician Peter Cornell — brother of the late Chris Cornell — received a diagnosis no man expects: breast cancer. Testing revealed he carries a CHEK2 mutation, which increases the risk for breast, prostate, and other cancers.

In this raw and powerful conversation, Peter shares how his wife first discovered the tumor, his treatment experience at Vanderbilt, and the profound impact of genetic testing on his family. We talk about stigma, resilience, mental health, and the hope that comes with awareness.

This episode was recorded in time for Hereditary Cancer Week (Sept. 28–Oct. 4, 2025) and Breast Cancer Awareness Month, making Peter’s story especially timely. It’s a reminder that hereditary cancer risk does not discriminate by gender — and silence is the most dangerous symptom of all.

Resources & Links:

💡 If Peter’s story resonated with you, share this episode with someone who might need to hear it, and follow the podcast on Instagram @PositiveGenePodcast for more conversations about living empowered with hereditary cancer risk.

Disclaimer: I am not a medical professional. I share from my own experiences as a hereditary cancer previvor and advocate. Please consult your own healthcare providers for personal medical guidance.

Episode Overview

Season changes can stir up a lot - especially if you’re living with hereditary cancer risk. In this conversation, Lisa Jacobs shares her framework of “graceful grit” - meeting hard moments with both courage and softness. We talk scanxiety, decision fatigue, and how simple, repeatable practices (breath, micro-goals, ritual, curiosity) help you feel present and grounded before screenings and big health decisions.

What You’ll Learn

Sticky Takeaways (save these)

Try-It-Now Practices

Resources Mentioned

Review/Share: If this helped you breathe a little easier, share it with a friend who’s facing scans soon.

Disclaimer: This podcast is for informational purposes only and is not a substitute for professional medical advice. Always consult your healthcare provider with any questions about your health.

Summary

Why does this matter? Because our digital footprints tell powerful stories — and understanding them helps us:

See how platforms influence stigma, visibility, and advocacy

Identify misinformation versus authentic support

Recognize the importance of representation and inclusivity in health narratives

Give both researchers and clinicians new insight into patient experience

This conversation highlights how essential research is in bridging the gap between lived experience, digital culture, and health care.

Resources & Links Mentioned

🎧 Listen now on your favorite podcast app and be sure to follow on Instagram @positivegenepodcast

Disclaimer: This podcast is for informational purposes only and is not a substitute for professional medical advice. Always consult your healthcare provider with any questions about your health.

Episode Summary:

Kristina shares her deeply personal journey: growing up surrounded by cancer, the emotional weight of testing and preventative surgery, and how she transformed her path into one of resilience, visibility, and action.

As the first woman in the world to complete all six Abbott World Marathon Majors after undergoing both a double mastectomy and hysterectomy, Kristina’s story is both extraordinary and relatable. Together, they discuss identity, healing through movement, patient advocacy, and the importance of sharing our stories — even before we feel “done” with them.

Whether you're navigating your own genetic risk or supporting someone who is, this episode is a powerful reminder that we are more than our mutations — and our purpose often begins right where the fear lives.

Mentioned in the episode:

In this insightful episode of The Positive Gene Podcast, host Sara Kavanaugh sits down with Dr. Brian Shirts, Associate Professor of Pathology, Microbiology, and Immunology at Vanderbilt University and founder of ConnectMyVariant.org. Together, they explore the powerful potential of family-based genetic outreach as a pathway to preventing hereditary cancer.

Dr. Shirts shares the pivotal research discoveries and patient stories that led to the creation of ConnectMyVariant—a nonprofit connecting individuals with shared genetic variants to facilitate life-saving family communication. From building networks of third cousins to training family outreach navigators, this episode highlights a revolutionary model of prevention through connection.

Sara also shares her own experience joining the platform, offering listeners a firsthand look at the simple but impactful steps they can take to protect themselves and their families.

This conversation is a must-listen for hereditary cancer previvors, survivors, healthcare providers, and advocates alike—offering a new lens on what prevention really means and how each of us can be a link in a life-saving chain.

Resources Mentioned in This Episode:

Connect My Variant: https://connectmyvariant.org

FORCE: Facing Our Risk of Cancer Empowered – https://www.facingourrisk.org

My Faulty Gene – https://www.myfaultygene.org

ICARE Registry - https://inheritedcancer.net/

BYU Center for Family History and Genealogy - https://cfhg.byu.edu/

AliveAndKickn (for Lynch Syndrome) – https://www.aliveandkickn.org

Positive Gene Podcast Blog – https://positivegenepodcast.com

Listen & Subscribe:

Want to support this incredible work?  You can donate to help expand family outreach and cancer prevention efforts here:

Note on Timing:

Colorectal Cancer Awareness, Genetic Risk, and Breaking Barriers to Screening with Dr. Frederick Gandolfo, Board-Certified Gastroenterologist & Host of The Real GI Doctor Show

Episode Overview:

We keep it real and transparent—yes, we talk about things most people don’t like to discuss, like hemorrhoids, colonoscopies, and stool tests. But these conversations are essential for normalizing screening, early detection, and saving lives and Dr. Gandolfo does an amazing job of making complex GI health topics understandable.

If you’ve been putting off a colonoscopy or have concerns about your colorectal cancer risk, this episode is for you.

Topics Covered:

Resources Mentioned in This Episode:

If you’re 45 or older, or have a family history of colorectal cancer, don’t wait—talk to your doctor about screening.

Listen & Subscribe:

Disclaimer: