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The Positive Gene Podcast | Hereditary Breast Cancer Series, Episode 2 Knowing you have an increased breast cancer risk brings important decisions. If you choose continued surveillance, what does “watching closely” actually look like? In the second episode of our 10-part hereditary breast cancer series, host Sara Kavanaugh welcomes Dr. Rachel Brem, a breast imaging radiologist, breast cancer survivor, BRCA1 carrier, and co-founder and chief medical officer of the Brem Foundation. Dr. Brem shares how her mother’s breast cancer diagnosis at age 33 shaped her career, and how she discovered her own breast cancer while testing ultrasound equipment shortly before a planned risk-reducing mastectomy. Together, Sara and Dr. Brem explore the considerations behind surveillance and risk-reducing surgery, how different imaging tools contribute to early detection, and why screening conversations should account for your individual risk. Drawing on her own experience living with a CHEK2 variant and extremely dense breasts, Sara shares the questions that come with choosing surveillance and revisiting decisions as research and personal circumstances evolve. In this episode, we discuss • How Dr. Brem’s experiences as a daughter, physician, and patient shaped her approach to breast care • The personal considerations behind surveillance and risk-reducing mastectomy • The roles of mammography, breast MRI, ultrasound, and contrast-enhanced mammography • Automated breast ultrasound (ABUS) and its role in supplemental imaging • Why breast density matters and what to ask your healthcare team • Understanding screening callbacks, false positives, and biopsies • Why a negative BRCA result doesn’t necessarily mean average breast cancer risk • Financial and transportation barriers to breast care • Emerging applications of artificial intelligence in breast imaging • Speaking up when you have questions or concerns about your breast health About our guest Dr. Rachel Brem is a breast imaging radiologist, professor and vice chair of radiology, and director of breast imaging and intervention at George Washington University. A breast cancer survivor and BRCA1 carrier, she brings both professional expertise and personal experience to her work in early detection and patient advocacy. She is co-founder and chief medical officer of the Brem Foundation to Defeat Breast Cancer and co-author, with breast surgeon Dr. Christy Teal, of No Longer Radical: Understanding Mastectomies and Choosing the Breast Cancer Care That’s Right for You. Connect with Dr. Brem and the Foundation: • Brem Foundation: https://www.bremfoundation.org/ • About Dr. Brem: https://www.bremfoundation.org/dr-brem Resources mentioned in this episode Breast health education and risk awareness • Brem Foundation: Education, resources, and information about breast cancer early detection. https://www.bremfoundation.org/ • CheckMate: The Brem Foundation’s breast health quiz, available through its website, can help you identify questions to discuss with your healthcare provider. Breast imaging technology • Automated breast ultrasound (ABUS): An imaging approach that captures a broad set of breast ultrasound images for a radiologist to review. It uses sound waves without ionizing radiation or injected contrast and may be used as supplemental screening for people with dense breasts. • BeSound: Dr. Brem discusses this company’s approach to expanding access to automated breast ultrasound. Visit its website for information about services and availability. https://www.besoundbreast.com/ Supplemental ultrasound does not replace recommended mammography or a personalized high-risk screening plan. Ask your healthcare team which imaging options are appropriate for you. Access to breast care • B-Fund and Wheels for Women: Learn about the Brem Foundation’s programs addressing financial barriers to diagnostic testing and transportation barriers to breast care. https://www.bremfoundation.org/accessforwomeninneed Reading and screening guidance • No Longer Radical, by Dr. Rachel Brem and Dr. Christy Teal: https://www.simonandschuster.com/books/No-Longer-Radical/Rachel-Brem/9781668001134 • National Comprehensive Cancer Network (NCCN) patient resources: https://www.nccn.org/patientresources/patient-resources About this series This episode is part of a 10-part series exploring the medical and personal experiences of living with hereditary breast cancer risk. Through conversations with genetic counselors, physicians, advocates, previvors, and survivors, we explore risk assessment, high-risk screening, preventive surgery, decision-making, and the emotional realities of living with increased risk. Our goal is to help you better understand your options, ask informed questions, and work with your healthcare team to make decisions that are right for you. Start with Episode 1, Understanding Hereditary Breast Cancer Risk with Genetic Counselor, Dena Goldberg, and follow The Positive Gene Podcast so you don’t miss the next conversation. Medical disclaimer This podcast is intended for education and awareness only and does not provide individualized medical advice. Genetic risk, screening recommendations, and preventive options vary by individual. Please consult a qualified healthcare professional or genetic counselor about your personal and family history. Host: Sara Kavanaugh | The Positive Gene Podcast Website: https://www.sarakavanaugh.com Instagram: https://www.instagram.com/positivegenepodcast/

The Positive Gene Podcast | Hereditary Breast Cancer Series, Episode 1 When we hear about hereditary breast cancer, BRCA1 and BRCA2 are often the first genes that come to mind. But hereditary breast cancer risk is much more complex, and understanding your genetic information can make a significant difference in how you approach your health. In the first episode of our 10-part hereditary breast cancer series, host Sara Kavanaugh welcomes Dena Goldberg, MS, CGC, a board-certified genetic counselor, science communicator and founder of Malibu Genetics Concierge, also known as Dena DNA. Dena brings years of experience in cancer genetics, patient education and advocacy to a conversation designed to make genetics more understandable for anyone navigating hereditary cancer risk. Together, Sara and Dena explore what makes cancer hereditary, why a family history of cancer doesn't always tell the whole story, and what genetic testing can and cannot tell us about our future health. They also discuss genes beyond BRCA, including CHEK2, ATM and PALB2, the importance of understanding variants of uncertain significance (VUS), and why genetic test results should be interpreted alongside personal and family history. Drawing on her own experience living with Lynch syndrome and a CHEK2 variant, Sara shares the questions and challenges that can arise even years after receiving a positive genetic test result. In this episode, we discuss The difference between hereditary, familial and sporadic cancer Why someone can carry a hereditary cancer mutation without an obvious family history How breast cancer risk differs across genes and even specific variants Who should consider genetic testing and how to access genetic counseling Understanding positive, negative and uncertain genetic test results The difference between inherited (germline) and tumor (somatic) genetic testing Sharing genetic information with family members and cascade testing Building a healthcare team, finding reliable resources and making informed decisions over time About our guest Dena Goldberg, MS, CGC, is a board-certified genetic counselor and science communicator who makes genetics approachable through education, social media and her work with patient communities. Known online as Dena DNA, she creates educational videos, explainers and resources to help people better understand genetic testing and inherited health conditions. Connect with Dena: Instagram: @dena.dna TikTok: @denadna YouTube: @DenaDNA Website / genetic counseling information: https://www.denadna.com/ Resources mentioned in this episode Genetic testing and counseling JScreen: https://www.jscreen.org/ JScreen Promo Code: Use code DENADNA to get $10 off your testing kit. Genetic information and variant updates ICARE Registry: https://inheritedcancer.net PROMPT Registry: https://promptstudy.info/ (https://www.genomeconnect.org/) My Gene Counsel / Living Lab Report: [https://www.mygenecounsel.com/ ConnectMyVariant: https://connectmyvariant.org/ Citizen Genetics: https://www.citizengenetics.co/ National Comprehensive Cancer Network (NCCN): https://www.nccn.org/patientresources/patient-resources Community support FORCE (Facing Our Risk of Cancer Empowered): https://www.facingourrisk.org The Breasties: https://thebreasties.org/ We Got This, cancer gift registry: https://wegotthis.org/ A little something extra: the DNA headband! If you're watching the video version, you may notice Sara wearing a genetics-inspired headband from Lilac Market Headbands. After seeing Dena share the brand on Instagram, Sara ordered the DNA-print design, which arrived just in time for their recording! Check out Lilac Market Headbands and use code DenaDNA for a discount.  Click HERE to order. This is a product mention inspired by Dena's social media post. No paid sponsorship of this episode is indicated. About this series This episode launches a 10-part series exploring the medical and personal experiences of living with hereditary breast cancer risk. Through conversations with genetic counselors, physicians, advocates, previvors and survivors, we'll explore risk assessment, high-risk screening, preventive surgery, decision-making and the emotional realities of living with increased risk. Our goal is to help you better understand your options, ask informed questions and work with your healthcare team to make decisions that are right for you. Follow The Positive Gene Podcast so you don't miss the next conversation. Medical disclaimer This podcast is intended for education and awareness only and does not provide individualized medical advice. Genetic risk, screening recommendations and preventive options vary by individual. Please consult a qualified healthcare professional or genetic counselor about your personal and family history. Host: Sara Kavanaugh | The Positive Gene Podcast Website: https://www.sarakavanaugh.com Instagram: @positivegenepodcast

Your Voice Matters: How Patient Advocates Shape Healthcare Policy 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: Why patient and caregiver stories carry so much weight with legislators How healthcare legislation actually moves through the process Why advocacy organizations are so important What makes an advocacy meeting memorable How research, insurance, and access to care intersect with public policy The role each of us can play in improving healthcare, regardless of political affiliation 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. Resources Mentioned Advocacy Organizations FORCE (Facing Our Risk of Cancer Empowered): https://www.facingourrisk.org Susan G. Komen: https://www.komen.org Fight Colorectal Cancer: https://fightcolorectalcancer.org Lynch Syndrome Awareness & Education: https://lynchsyndromeawareness.com/ Learn More Representative Bob Freeman - TN General Assembly Site https://wapp.capitol.tn.gov/apps/LegislatorInfo/Member?district=H56&ga=114 Find your Tennessee legislators: https://wapp.capitol.tn.gov/apps/fml/search Find your U.S. elected officials: https://www.usa.gov/elected-officials Connect with Sara Kavanaugh 🌐 Website: https://www.sarakavanaugh.com 🎙️ The Positive Gene Podcast: https://thepositivegenepodcast.podbean.com/ 📸 Instagram: https://www.instagram.com/positivegenepodcast 💼 LinkedIn: https://www.linkedin.com/in/sarakavanaughspeaks/ ▶️ YouTube: https://www.youtube.com/@sarakavanaughspeaks Enjoying the Podcast? If this episode encouraged or inspired you, please consider: ⭐ Following or subscribing to The Positive Gene Podcast ⭐ Leaving a rating and review on your favorite podcast platform ⭐ Sharing this episode with a friend, caregiver, healthcare professional, or fellow advocate 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 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. In This Episode 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 Resources Mentioned Walking the Genetic Line Podcast Sara Champie, LCSW: Website: www.sarachampielcsw.com Instagram: @sarachampielcsw Connect with The Positive Gene Podcast Follow The Positive Gene Podcast on your favorite podcast platform. Follow along on Instagram @positivegenepodcast for episodes, advocacy, education, and hereditary cancer conversations. Disclaimer:  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. **** Episode Overview 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. Key Takeaways 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. Topics We Cover 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 Resources 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 Final Thought 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.

Lynch Syndrome Series 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. Episode Overview 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.” Key Takeaways 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. Resources & Links 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  Why This Episode Matters 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. Listen & Share 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. Episode Overview 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. Key Takeaways 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 Resources & Links 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 Why This Episode Matters 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.

Episode Summary 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: [email protected] Positive Gene Podcast Blog - read full transcript here Connect with Sara on Instagram @positivegenepodcast

Episode Summary 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 Resources Mentioned 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 Listen + Connect 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.

Episode Summary 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. Key Topics Covered 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 Resources Maddie Williamson — Instagram: @MaddieLucy27 Support & Genetic Counseling 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 LGBTQ+-Affirming Care & Education 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 Research & Representation 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 Listen & Subscribe 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.