Episode Summary In this episode of The Positive Gene Podcast, Sara Kavanaugh sits down with therapist, BRCA1 previvor, and podcast host Sara Champie for a deeply honest conversation about the emotional realities of hereditary cancer risk. Together, they explore the layers of fear, grief, agency, trauma, identity, and healing that can emerge after genetic testing and prevention decisions.

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.

• Sara Champie’s BRCA1 story and the loss of her mother to ovarian cancer
• Why hereditary cancer risk is not a “linear” emotional journey
• The connection between trauma, grief, anxiety, and prevention decisions
• How “strength” can sometimes become emotional avoidance
• Why agency and timing matter in risk-reducing decisions
• Trauma-informed perspectives on genetic counseling and medical care
• The emotional and somatic impacts of hereditary cancer risk
• The importance of connection, community, and witnessing grief
• The inspiration behind Walking the Genetic Line podcast

• Walking the Genetic Line Podcast
• Sara Champie, LCSW: Website: www.sarachampielcsw.com Instagram: @sarachampielcsw

Follow The Positive Gene Podcast on your favorite podcast platform.

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.

****

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.

• Family history matters more than many realize Patterns across generations can hold critical information about inherited cancer risk.
• Genetic testing can change outcomes Knowledge allows for earlier screening, prevention strategies, and informed decision-making.
• You are not only making decisions for yourself Testing and sharing information can directly impact children, siblings, and extended family.
• Prevention and early detection are powerful Diane’s family story shows what is possible when risk is understood and acted on.
• Conversations save lives Talking openly about cancer history within families is one of the most important steps people can take.

• Growing up in a family where cancer felt inevitable
• The moment Diane first learned about Lynch syndrome
• Deciding to pursue genetic testing
• What changed after her family began testing
• The emotional experience of learning her son did not inherit the mutation
• Advocacy, awareness, and speaking on a national stage
• Why sharing family health history is critical
• How awareness continues to evolve—and where gaps still exist

• AliveandKick’n (Lynch Syndrome advocacy and support) https://aliveandkickn.org
• FORCE (Facing Our Risk of Cancer Empowered) https://www.facingourrisk.org
• Jacqueline Rush Foundation - Lynch Syndrome Advocacy and Education https://www.jrushfoundation.org
• Lynch Syndrome Awareness & Education https://www.lynchsyndromeawareness.com
• National Society of Genetic Counselors (NSGC) – Find a genetic counselor https://www.nsgc.org
• NCCN Guidelines for Patients (Evidence-based screening guidance) https://www.nccn.org/patients
• My Faulty Gene (Advocacy + conference presence Diane supports) https://www.myfaultygene.org

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:

• the importance of recognizing symptoms earlier, even in young patients
• the need for greater physician awareness of Lynch syndrome
• how research and treatment have evolved significantly since Jacqueline’s diagnosis
• and why knowledge of genetic risk can change outcomes

As Joan shares, “Knowing you have Lynch syndrome changes everything. It gives you the opportunity to change your genetic destiny instead of leaving it up to fate.”

• Awareness can change outcomes. Earlier recognition of symptoms and genetic risk can alter the course of care.
• Lynch syndrome is often underrecognized. Gaps still exist in both public and physician awareness.
• Genetic knowledge creates opportunity. Screening, prevention, and early detection save lives.
• Research is advancing rapidly. Immunotherapy and prevention-focused trials are changing what’s possible.
• Advocacy plays a critical role. Bridging the gap between patients and providers remains essential.

Jacqueline Rush Foundation 🌐 https://jrushfoundation.org

Media & Awareness

• Today Show segment on Lynch syndrome
• Katie Couric feature on Jacqueline’s story

Lynch Syndrome Conferences (Patient-Focused)

• Penn Medicine Lynch Syndrome Conference (virtual + recordings available)
• Dana-Farber Lynch Syndrome Conference (virtual + recordings available)
• University of Colorado Cancer Center (biennial conference)

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

Additional Resource

• Previvor Perspectives Discussion - Living with Lynch Syndrome Risk

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:

• a family member
• a young adult experiencing symptoms
• or a healthcare provider

🎧 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. Even partial information can help guide testing and screening decisions.

• You have to start the conversation. Talking about cancer risk may feel uncomfortable, but it can save lives.

• Genetic testing provides clarity and direction. As Jennifer describes, it can serve as both a “flashlight and a map.”

• Lynch syndrome is not rare. Many individuals and families may be affected without realizing it.

• Community and connection reduce isolation. Advocacy organizations play a critical role in helping people feel supported.

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

• Website: https://lynchsyndromeawareness.com
• Instagram: @lynchsyndromeawareness
• Facebook: Lynch Syndrome Awareness and Education
• LinkedIn: Lynch Syndrome Awareness

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

• Community support and upcoming expert webinars

Upcoming Webinar: March 30 Register via their website or social media

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.

🎧 The Positive Gene Podcast

Connect with Jennifer

• Follow Jennifer on LinkedIn

Connect with The Positive Gene Podcast

• www.positivegenepodcast.com
• Instagram: @positivegenepodcast

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

• Do not ignore symptoms. Even at a young age, changes in your body are worth investigating.
• Advocate for yourself. If something doesn’t feel right, seek a second opinion.
• Genetic testing provides clarity. Understanding hereditary risk can guide screening and treatment decisions.
• Mental health is part of the journey. Support, including therapy, can play a critical role.
• Community matters. Connection with others facing similar challenges can reduce isolation.
• There are more options today than many people realize. Treatment and research continue to evolve.

Resources Mentioned in this episode:

Mental Health Support

• 988 Suicide & Crisis Lifeline (U.S.) Call or text 988 for 24/7, free, confidential support

Lynch Syndrome & Hereditary Cancer

• AliveandKick’n Patient-led Lynch syndrome advocacy and education
• Fight Colorectal Cancer (Fight CRC) Research, advocacy, and patient support
• Colon Cancer Coalition Screening awareness and education
• Other Lynch Syndrome Resources:
  • Lynch Syndrome Awareness and Education
  • Jacqueline Rush Foundation

Young Adult & Peer Support

• Stupid Cancer Support and programming for young adults with cancer
• Man Up to Cancer Peer support community focused on connection and reducing isolation

Why This Episode Matters

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

His voice brings attention to:

• the reality of young adult cancer
• the importance of early awareness
• the need for accessible care and support
• and the role of advocacy in improving outcomes for others

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

• Follow JJ Singleton on social media to follow his advocacy work @jj5145 on Instagram

Connect with The Positive Gene Podcast

• www.positivegenepodcast.com
• Instagram: @positivegenepodcast

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

• David’s colorectal cancer diagnosis at age 29
• Discovering Lynch syndrome after a second cancer diagnosis
• Navigating genetic risk within a family
• Why knowledge and genetic testing can be empowering
• The founding of AliveandKick’n
• The impact of community and patient advocacy
• The Living with Lynch workshop program
• Advances in Lynch syndrome research including immunotherapy and microsatellite instability
• What newly diagnosed patients should know
• Why awareness of family cancer history still matters

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.” — David Dubin

Resources & Links

• AliveandKick’n Website: https://aliveandkickn.org
• Instagram: https://www.instagram.com/aliveandkickn/
• AliveandKick’n Podcast: https://www.aliveandkickn.org/podcast-1
• Living with Lynch 2026 Workshops https://docs.google.com/forms/d/e/1FAIpQLSeiWL0_UNTGxIeB3whge4S4jwKn8I-yYuhYRKfc7I8tpaGjcQ/viewform
• Living with Lynch Patient Videos: https://www.aliveandkickn.org/living-with-lynch-videos
• Lynch Syndrome Information: https://www.aliveandkickn.org/what-is-lynch-syndrome-1
• Colon Cancer Coalition: https://coloncancercoalition.org/
• Get Your Rear in Gear Races: https://coloncancercoalition.org/get-involved/participate/get-your-rear-in-gear/

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

Episode Summary In this episode of The Positive Gene Podcast, Sara sits down with Aliza Friedlander, a BRCA1-positive previvor and advocate with the Cancer Vaccine Coalition. Aliza shares her unusual path to genetic testing, what shifted after her sister’s breast cancer diagnosis, and how she ultimately decided on risk-reducing surgery. Together, they unpack what “cancer vaccines” really mean (and why this research is closer than most people realize), plus how storytelling can accelerate awareness, funding, and participation in clinical trials.

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/

• Visit the podcast blog at www.sarakavanaugh/podcast
• Find Sara on Instagram @positivegenepodcast

Connect / Support If this episode helped you, consider sharing it with someone navigating hereditary cancer risk, survivorship, or prevention decisions. And if you’d like to support this research, visit the Cancer Vaccine Coalition's website to learn about awareness efforts, fundraising, and clinical trial education.

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