The Positive Gene Podcast

As patient advocates, we have the opportunity to help shape healthcare policy by sharing our lived experiences with the people making decisions that affect our lives.

In this episode of The Positive Gene Podcast, host Sara Kavanaugh sits down with Tennessee State Representative Bob Freeman for a candid conversation about how legislation really works, why patient stories matter, and how advocates can help influence meaningful change.

Sara first met Representative Freeman during Susan G. Komen Advocacy Day at the Tennessee Capitol. Walking into those legislative meetings initially felt intimidating, but she quickly realized something that changed her perspective forever: legislators don't just need data. They need to understand how policies affect real people.

Together they discuss:

One of the most powerful reminders from this conversation is that medical professionals are experts in the science. Legislators are experts in the policymaking process. Patients and caregivers are the experts in living with the consequences of those decisions.

Every one of those perspectives belongs at the table.

Whether you've participated in an Advocacy Day before or have wondered if your story could ever make a difference, this episode will leave you feeling informed, encouraged, and empowered to use your voice.

If this episode resonates with you, consider joining an advocacy organization such as FORCE, Susan G. Komen, Fight Colorectal Cancer, or another organization aligned with your cause. Advocacy is often easier - and more impactful - when we work together.

Because meaningful change doesn't happen by accident.

It happens when people show up.

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If this episode encouraged or inspired you, please consider:

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Your support helps us reach more individuals and families navigating hereditary cancer risk.

Remember: Knowledge is power. Prevention is possible. And your voice has the power to create meaningful change.

Episode Summary

Sara Champie shares her personal journey after learning she carried a BRCA1 mutation following the loss of her mother to ovarian cancer, and how that experience ultimately shaped her work as a psychotherapist specializing in hereditary cancer and genetic risk. The conversation dives into trauma-informed care, the emotional weight of prevention decisions, the complexity of “being strong,” and why connection and storytelling matter so much in this community.

They also discuss Sara’s podcast, Walking the Genetic Line, which creates space for the deeply human side of genetic testing and hereditary cancer risk.

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Follow along on Instagram @positivegenepodcast for episodes, advocacy, education, and hereditary cancer conversations.

This podcast episode is intended for educational and storytelling purposes only and should not be considered medical or mental health advice. Please consult your healthcare provider or licensed mental health professional for individualized support.

As we close out Colorectal Cancer Awareness Month, this episode marks the final installment in our series on Lynch syndrome and hereditary cancer risk. If you haven’t yet, I encourage you to go back and listen to the earlier episodes—each one offers a powerful and important perspective on what it means to understand and navigate inherited cancer risk.

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Diane Hardesty’s story is one that clearly shows what can change when awareness meets action.

Before genetic testing, Diane’s family experienced ten cancer-related deaths connected to Lynch syndrome. Cancer wasn’t a possibility, it felt inevitable.

But once Diane chose to pursue genetic testing, everything shifted.

Through testing, proactive screening, and open family communication, her family has now experienced zero cancer-related deaths.

In this conversation, Diane shares her personal journey, the emotional weight of growing up with cancer as an expectation, and how one decision changed the trajectory for future generations.

This episode is a reminder that understanding your risk doesn’t create fear—it creates options.

Diane’s story is a powerful example of how knowledge can change a family’s future.

If cancer runs in your family, or if those conversations have never happened, this episode is a place to start.

🎧 The Positive Gene Podcast - https://thepositivegenepodcast.podbean.com/

IMPORTANT: This episode is for educational purposes and is not medical advice. Always consult your healthcare team for personal guidance.

This episode is part of a five-part series on living with Lynch syndrome, focused on raising awareness and sharing perspectives from patients, advocates, and organizations working to improve outcomes in hereditary cancer.

In this episode, Sara Kavanaugh speaks with Joan Rush, co-founder of the Jacqueline Rush Foundation, an organization dedicated to raising awareness of Lynch syndrome among both patients and the medical community.

Joan shares the story of her daughter Jacqueline, who was diagnosed with colorectal cancer at just 20 years old after years of symptoms that were dismissed. During treatment, Jacqueline and her family learned the underlying cause was Lynch syndrome.

Although Jacqueline passed away at 23, her story continues to shape awareness, research, and advocacy in meaningful ways.

This conversation highlights:

As Joan shares,

Jacqueline Rush Foundation

Media & Awareness

Lynch Syndrome Conferences (Patient-Focused)

👉 Many sessions offer recordings/replays—check institutional sites for access.

Additional Resource

Jacqueline’s story reflects a time when awareness and options were limited.

Today, the landscape is different.

There are better tools, more research, and more opportunities to prevent or detect cancer early.

This episode is not only about loss. It’s about what is now possible.

If this episode resonates, consider sharing it with:

🎧 The Positive Gene Podcast - https://thepositivegenepodcast.podbean.com/

Lynch Syndrome Series - This episode is part of a five-part series on living with Lynch syndrome, released in recognition of Lynch Syndrome Awareness Day on March 22.

In this episode, Sara Kavanaugh speaks with Jennifer Mercer, founder of Lynch Syndrome Awareness and Education, a nonprofit dedicated to increasing awareness and helping families better understand hereditary cancer risk.

Family history matters more than most people realize.

You have to start the conversation.

Genetic testing provides clarity and direction.

Lynch syndrome is not rare.

Community and connection reduce isolation.

Jennifer’s advocacy began with her own family’s experience. After reconnecting with her biological father, she witnessed him endure multiple primary cancers over decades before genetic testing finally revealed Lynch syndrome.

Following his diagnosis and passing, Jennifer made the decision to pursue testing herself and tested positive for an MSH2 mutation. What followed was not only a personal turning point, but the beginning of a broader mission to help other families avoid the same uncertainty.

This conversation focuses on:

how awareness can change outcomes across generations

why family communication is critical in hereditary cancer

and how community and accessible information can support individuals navigating Lynch syndrome

Lynch Syndrome Awareness and Education

Educational tools, family letters, and resources for newly diagnosed individuals

Community support and upcoming expert webinars

Upcoming Webinar: March 30

This episode is a reminder that hereditary cancer risk does not exist in isolation. It lives within families.

Understanding your history, asking questions, and sharing information can change not only your path, but the path of future generations.

Listen & Share

If this episode resonates, consider sharing it with someone who may benefit—from patients and families to healthcare providers and advocates.

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Connect with Jennifer

Connect with The Positive Gene Podcast

IMPORTANT: This episode is for educational purposes and is not medical advice. Always consult your healthcare team for personal guidance.

Lynch Syndrome Series

In recognition of Lynch Syndrome Awareness Day on March 22 each year, The Positive Gene Podcast is featuring a five-part series exploring what it means to live with Lynch syndrome; from diagnosis and treatment to advocacy, prevention, and long-term survivorship.

Note: This episode includes brief discussion of depression and suicidal thoughts. Please listen with care. Support resources are included below.

Episode Overview

In this episode, Sara Kavanaugh speaks with JJ Singleton, a young adult colorectal cancer survivor and advocate living with Lynch syndrome.

Diagnosed at just 27, JJ shares the experience of noticing symptoms but not initially acting on them, the reality of navigating cancer treatment in a rural setting, and what it meant to later learn his diagnosis was connected to a hereditary cancer condition.

This conversation goes beyond diagnosis. JJ speaks openly about the mental health challenges that came with long-term treatment, including periods of deep depression, and how therapy, connection, and advocacy helped him find a path forward.

Today, JJ uses his experience to support others through advocacy, peer connection, and patient advisory work, helping ensure that the realities of young adult cancer are better understood.

This episode offers both perspective and practical insight for patients, families, and those supporting individuals navigating hereditary cancer risk.

Key Takeaways

Resources Mentioned in this episode:

Mental Health Support

Lynch Syndrome & Hereditary Cancer

Young Adult & Peer Support

Why This Episode Matters

JJ’s experience highlights that hereditary cancer is not limited by age, geography, or expectation.

His voice brings attention to:

Listen & Share

If this episode resonates, consider sharing it with someone who may benefit—from patients and families to healthcare providers and advocates.

🎧 The Positive Gene Podcast

Connect with JJ

Connect with The Positive Gene Podcast

This episode kicks off a five-part series on living with Lynch syndrome, released in recognition of Lynch Syndrome Awareness Day on March 22.

When host Sara Kavanaugh was first diagnosed with hereditary cancer mutations, including Lynch syndrome, there were few voices sharing what life with inherited cancer risk actually looked like.

One of the first organizations she discovered was AliveandKick’n. What stood out immediately wasn’t just the information they shared, it was how they shared it: honest, approachable, and grounded in the idea that living with Lynch syndrome doesn’t have to mean living in fear.

In this episode, Sara speaks with David Dubin, Lynch syndrome survivor, longtime advocate, and co-founder of AliveandKick’n. David shares the story behind his own cancer diagnosis, what it meant to discover his condition was hereditary, and how he and his wife Robin turned that experience into a patient-led organization supporting individuals and families navigating Lynch syndrome.

Together they discuss the importance of understanding family history, advances in Lynch syndrome research and treatment, and why awareness still matters, especially as we approach Lynch Syndrome Awareness Day on March 22.

In This Episode

Key Takeaway:  “It’s not a death sentence. The more you know, the better your opportunity is to treat it and live a long, productive life.”

Resources & Links

IMPORTANT: This episode is for educational purposes and is not medical advice. Always consult your healthcare team for personal guidance.

Episode Summary

What We Cover

Aliza’s BRCA1 family discovery and why she initially chose not to test

The role of anxiety, readiness, and trusted medical support in decision-making

What changed after her sister’s diagnosis — and what moved Aliza toward surgery

What the Cancer Vaccine Coalition is and why it’s different

Cancer vaccines explained in everyday language: treatment, recurrence prevention, and potential future prevention

Why storytelling is the bridge between complex science and public action

How to share your story without feeling overexposed

The message Aliza wants every listener to remember: make informed decisions on your timeline, with people you trust

Resources & Links

Cancer Vaccine Coalition: https://cancervaccinecoalition.org

Follow Cancer Vaccine Coalition (Instagram): @CancerVaccineCoalition

Aliza on Instagram: @AlizaFriedlander

Aliza’s personal essay (JMore Living): https://jmoreliving.com/2019/10/30/a-personal-story-of-living-with-the-risks/

Referenced research: University of Washington Cancer Vaccine Institute summary: https://www.uwcvi.org/post/2024-a-year-of-clinical-breakthroughs-at-the-cancer-vaccine-institute

Referenced publication (PubMed): https://pubmed.ncbi.nlm.nih.gov/36326756/

Connect / Support

IMPORTANT: This episode is for educational and storytelling purposes and is not medical advice. Always consult your healthcare team for personal guidance.

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.