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!

• Resources Mentioned

  • 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: lisas@facingourrisk.org

  • Positive Gene Podcast Blog - read full transcript here

  • Connect with Sara on Instagram @positivegenepodcast

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:

• Why media coverage around public figures’ diagnoses often misses the prevention angle
• Why genetic testing isn’t being offered early enough and the very real consequences
• The Angelina Jolie Effect vs. modern missed opportunities
• How legislative policies are threatening research, Medicaid access, and public health
• How people and providers can start earlier, clearer conversations
• What real self-advocacy looks like
• How to navigate family conversations about genetic risk
• The difference between clinical genetic testing and direct-to-consumer kits
• Why understanding your family history still matters most

• HealthyGene Website: https://myhealthygene.com
• Know Your Risk Quiz (free assessment for BRCA & Lynch): available on the HealthyGene homepage: https://www.myhealthygene.com/know-your-risk-quiz
• Jennifer's Blog: President Biden's Diagnosis: https://www.myhealthygene.com/post/biden-prostate-cancer-brca-risk
• Find a Genetic Counselor: https://findageneticcounselor.com

• Podcast blog + extended show notes: www.positivegenepodcast.com
• Connect with Jennifer:
  • Instagram: https://www.instagram.com/myhealthygene
  • LinkedIn: https://www.linkedin.com/company/healthygene/
• Connect with Sara/Podcast:
  • Instagram: https://www.instagram.com/positivegenepodcast/
  • LinkedIn: https://www.linkedin.com/in/sarakavanaughspeaks/
  • Website: www.sarakavanaugh.com

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

• FORCE – LGBTQIA+ Peer Support Group A safe space for LGBTQIA+ individuals navigating hereditary cancer risk. facingourrisk.org
• The Breasties – LGBTQ+ Support Community and resources for those impacted by hereditary breast/ovarian cancer. thebreasties.org
• Sarah Roth — Genetic Counselor & Writer: @OtherSarah
• National Society of Genetic Counselors – Find a GC Tool Search for licensed genetic counselors, including those with LGBTQ+ affirming experience. nsgc.org/page/find-a-genetic-counselor

• 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 Continuing education, best practices, and health policy insights. glma.org

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

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

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

• The Positive Gene Podcast is available on Apple Podcasts, Spotify, and all major platforms.
• Visit PositiveGenePodcast.com for more conversations that empower, educate, and inspire those navigating hereditary cancer risk.

Disclaimer: This podcast is for educational and informational purposes only. The views shared are based on personal and professional experiences and should not replace medical advice. Always consult with your healthcare provider, genetic counselor, or qualified medical professional regarding your individual situation.

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: Tiffany Graham Charkosky is a writer whose essays and short stories explore love, family, and human connection. Her memoir, Living Proof: How Love Defied Genetic Legacy, weaves together her family’s experience with Lynch Syndrome, her own journey through genetic testing and prevention, and her reflections on resilience, motherhood, and hope. Tiffany lives in Northeast Ohio with her family and has worked in the arts for over twenty years.

Connect with Tiffany: 🌐 Website: tiffanygrahamcharkosky.com 📚 Order Living Proof: How Love Defied Genetic Legacy (launches October 21) — Amazon link placeholder 📸 Instagram: @tiffanygrahamcharkosky

Connect with Sara: 🎧 Listen to past episodes: The Positive Gene Podcast 🌐 Website: positivegenepodcast.com 📸 Instagram: @positivegenepodcast

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:

• Peter Cornell’s Music: Spotify | Apple Music
• Peter's Family Business - GlutenFree Goose: Website | Instagram
• FORCE (Facing Our Risk of Cancer Empowered): Website | FORCE: CHEK2 Information

💡 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

• Graceful Grit, Defined: Why pairing compassion with action reduces brittleness and burnout.
• Scanxiety Tools: Breath patterns, grounding cues, and mantras you can use in waiting rooms and before results.
• Rituals That Help: Music/playlists, “bring-a-friend” (choosing the right companion), and bite-size scheduling.
• From Awareness to Alignment: Using body cues (jaw/shoulders/breath) to notice judgment and shift into curiosity.
• Seasonal Reframes: Using fall as a prompt for letting go, intention setting, and creating space for what’s next.

Sticky Takeaways (save these)

• “Presence isn’t passive — it’s powerful.”
• “Name it to tame it: This is scanxiety. It’s a real, natural response.”
• “Reduce the size of the moment: this is one wave, not the whole ocean.”
• “Ask: What am I in control of right now? Breath, posture, environment, support.”
• “If you don’t feel the feelings, they’ll find you — balance grace with grit.”

Try-It-Now Practices

• 5 breaths: Slow inhales/exhales; by breath #5 your nervous system starts to follow.
• 4-4-6 breath: Inhale 4, hold 4, exhale 6 (let out more than you take in).
• Grounding: Feet on the floor, soften jaw/shoulders, notice 3 things you can see/hear/feel.
• Micro-goal: One tiny completion (send the message, pack your bag, make the playlist).
• Curiosity over judgment: Replace “What if…?” spirals with “I wonder…?”
• Ritual: A consistent playlist for imaging appointments; a small kindness before/after.

Resources Mentioned

• • Practice to the Point: www.practicetothepoint.com
  • Connect with Lisa:
    • LinkedIn (Lisa Jacobs)
    • IG: @practicetothepoint
  • Follow the podcast on IG: @positivegenepodcast
  • Full transcript & extras: www.positivegenepodcast.com
  • Sara’s LinkedIn: https://www.linkedin.com/in/sarakavanaughspeaks/

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 In this episode of The Positive Gene Podcast, host Sara Kavanaugh takes the mic on the road in London with Dr. Stefania Vicari and Dr. Hannah Ditchfield of the University of Sheffield. Together, they explore how research into social media is reshaping what we know about hereditary cancer, advocacy, and the very word previvor.

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

• University of Sheffield Cancer Research – Previvorship in the Platform Society: https://sites.google.com/sheffield.ac.uk/previvorship
• Instagram: https://www.instagram.com/previvorship_research/
• Sage Journal: https://journals.sagepub.com/doi/10.1177/20563051251340862
• FORCE: Facing Our Risk of Cancer Empowered – https://www.facingourrisk.org
• Lynch Syndrome UK – https://lynch-syndrome-uk.org
• Alive and Kick’n – https://aliveandkickn.org
• FORCE XRAY – https://www.facingourrisk.org/XRAY

🎧 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: In this Season 3 premiere of The Positive Gene Podcast, host Sara Kavanaugh sits down with Kristina Coccoluto — a BRCA1 previvor, Abbott World Marathon Majors Six Star Finisher, and passionate advocate — to explore what it means to face genetic risk and still run forward with purpose.

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:

• Kristina Coccoluto on Instagram
• Kristina's blog - GENErational War
• FORCE – Facing Our Risk of Cancer Empowered
• Abbott World Marathon Majors
• Podcast Blog for additional photos and links