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On this episode we are joined by Ken Cleary, an angiosarcoma survivor and amputee. Ken describes the journey to diagnosis, how he made the decision to go forward with an amputation as his frontline treatment, and how he has adapted to life afterward. Ken’s reflections on his experience are honest and inspiring - his perspective both grounding and motivating. Of the many topics we discuss, we talk at length about the trust Ken put in his care team while making extremely difficult decisions, and how they have helped him through more than just his treatment. His team made such a profound impact that Ken nominated his nurse, Colleen Forbes, to receive SFA’s 2026 Compassionate Care Award, which she will be honored with at the 2026 Stand Up to Sarcoma Gala in October. We invite you to listen to Ken’s remarkable story, and if you are interested in honoring those who are making strides for the sarcoma community, we invite you to attend the Gala this October as well! With that, let’s hear from Ken! Information and Resources: Gala Information and Tickets: https://standuptosarcoma.curesarcoma.org/ Subtype Page: https://curesarcoma.org/sarcoma-subtypes/angiosarcoma/ Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/ Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704 Connect With Ken: Ken’s Instagram: @clearyken https://www.instagram.com/clearyken/

On this episode, in honor of Sarcoma Awareness Month, Brendan Locke shares the sarcoma journey of his wife, Melissa Locke. Brendan and Melissa have been vital in the advocacy work to get July nationally recognized as Sarcoma Awareness Month and you’ll hear the origin story of how they first brought this to their elected officials in partnership with SFA. Through emotional reflections on Melissa’s journey, we discuss why the visibility for sarcoma through a dedicated month is so important and talk about the hope we share that this platform may lead to the funding needed to achieve better treatment options for sarcoma patients. We are so grateful to Brendan for sitting down with us and have this conversation, and also to Melissa - for all she did for the sarcoma community, and all she continues to inspire through the hope she held. Hope that cannot be extinguished by death. Subtype Page: https://curesarcoma.org/sarcoma-subtypes/synovial-sarcoma/ Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/ Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704 Brendan’s Email: [email protected] Senate Resolution: https://www.ronjohnson.senate.gov/2026/06/10/sen-johnson-leads-senate-passage-of-national-sarcoma-awareness-month-resolution/ Reading of the Resolution on the Senate Floor: Fast forward to 3:54:30 (S.Res.765): Congressional Chronicle - Members of Congress, Hearings and More | C-SPAN.org | C-SPAN.org

On this episode, we’re joined by Rohini Deivasigamani, a 25-year-old from New Jersey who was diagnosed with Ewing sarcoma at 14 years old. Now, a decade later, she reflects on her journey from teenage cancer patient to young adult survivor and shares how time and perspective have shaped the way she processes that experience. Rohini shares not only about her own diagnosis and treatment, but also about her father’s cancer diagnosis, which came shortly after hers. She discusses how her understanding of what they both endured has evolved over the years and the lasting impact those experiences have had on her life. In recognition of National Cancer Survivor Month this June, we’re honored to share Rohini’s story with our community. Ten years after completing active treatment, she offers a real look at what survivorship means, the challenges and growth that come with it, and how she continues to navigate life beyond treatment. Rohini’s optimism is magnetic, and her honest reflections are sure to resonate with many in the sarcoma community. Thank you so much, Rohini, for joining us and for sharing your story so openly. Let’s dive in. Resources: Ewing Sarcoma Subtype Page: https://curesarcoma.org/sarcoma-subtypes/ewing-sarcoma/ Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/ Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704 Connect with Rohini: Rohini's Ted Talk: https://www.youtube.com/watch?v=-nvcWaMXM2s Instagram: https://www.instagram.com/rohinideiv TikTok: https://www.tiktok.com/@rotalks LinkedIn: https://www.linkedin.com/in/rohini-deivasigamani-758712207/

This week, we speak with Sarah Downey, an angiosarcoma patient, advocate, and writer. Sarah takes us through her diagnosis journey, which included misdiagnosis and dismissal of symptoms, all while navigating her senior year of college. Since her diagnosis, she has navigated treatment as she’s entered young adulthood, and shares with us what it’s been like coping with the uncertainty of sarcoma alongside this major life transition. A lifelong writer, Sarah recently began the project Echoes of Us RI to highlight stories of fellow patients, medical professionals, and caretakers, contributing to narrative medicine as a form of advocacy. Sarah explains how this has played a role in her journey, and also given her both an outlet and a purpose. When she isn’t writing or at treatment, Sarah travels as much as she can (and gives some tips on how she makes this work between treatments!), and talks about how she chooses to live despite her prognosis. This episode will both educate and inspire - true to Sarah as a writer and a human. Resources: Subtype Page: curesarcoma.org/sarcoma-subtypes/angiosarcoma/ Discussion Guide: curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/ Sarcoma Stories FB Group: www.facebook.com/groups/512452631597704 Connect with Sarah: Sarah’s Instagram: : www.instagram.com/sarah.downey20/ Echoes of US RI Instagram: www.instagram.com/echoesofusri/ Echoes of Us RI: www.echoesofusri.com/

On this episode, we speak with Gianna Cericola, a survivor of Desmoplastic Small Round Cell Tumor (DSRCT for short). After two long years, she rang the bell signifying the end of active treatment just two weeks before we recorded this episode. We feel so lucky to be able to sit down with her at this pivotal moment of transition. Gianna opens up about what being done with treatment actually means, and why the end of treatment isn’t the end of a cancer diagnosis. She shares about how she’s relied on self-advocacy, not only to receive a diagnosis but to navigate treatment and conversations with her medical team. As an adolescent young adult, Gianna talks about continuing to live her life through her diagnosis - including getting engaged during treatment and thinking about surrogacy to one day build her family - and why it can be difficult to plan for the future. This episode is full of raw and honest insight into Gianna’s experience, and we are so grateful for the time she took to share with us. We also wanted to note and give insight to a conversation we have about Gianna’s subtype being classified as ultra-rare. Sarcoma is a rare cancer to begin with, but within the numerous subtypes of sarcoma, there are some, like DSRCT, that are considered “ultra-rare” - defined as subtypes with an annual incidence of 1 or fewer cases per million people. Thank you Gianna for giving voice to the experience of being diagnosed with an ultra-rare subtype. Subtype Page: https://curesarcoma.org/sarcoma-subtypes/desmoplastic-small-round-cell-tumor/ Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/ Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704 Connect with Gianna: Gianna’s DSRCT Group: https://ig.me/j/Abb-dS58-Ff-DnKH/ Instagram: @gianna.cericola https://www.instagram.com/gianna.cericola/ TikTok: https://www.tiktok.com/@gianna.cericola

On today’s episode we’re sharing the sarcoma story of one of our Sarcoma Stories hosts, Tasha. Tasha has been hosting Sarcoma Stories since its inception in November 2024 and she’s now sharing her story about her Embryonal Rhabdomyosarcoma diagnosis. We also talk about some of the transitions happening at SFA with Tasha’s role as she embarks on a new endeavor, starting her program - Move Anyway - while welcoming Katie Wintergerst to the podcast as co-host. Let’s dive in! Subtype Page: https://curesarcoma.org/sarcoma-subtypes/embryonal-rhabdomyosarcoma/ Connect with Tasha: IG @tashanathan_ @moveanyway_ Email: [email protected] Move-anyway.com

On this episode, we speak with SFA Director of Europe’s Strategy and Engagement, Pan Pantziarka. While he is an incredible staff member at SFA who supports SFA’s global work, he also has a sarcoma story of his own as a care partner to his son, George. After George was diagnosed with three different primary cancers and passed in 2011, Pan quit his job in the corporate sector and found work in oncology. He is committed to making a difference using everything he can - scientific training, advocacy, and demand for change. He speaks to us today about rare cancer predispositions, such as Li Fraumeni Syndrome, the story of George and his mother, why knowledge is power, and where he finds hope. We are so lucky to not only have this conversation with Pan, but to have him on the team at SFA, striving for answers for sarcoma patients and their families. Thank you Pan, for all you do for the sarcoma community. Subtype Page: https://curesarcoma.org/sarcoma-subtypes/osteosarcoma/ Sarcoma Patient Pathways Survey: https://curesarcoma.org/get-involved/sarcoma-patient-experience-survey/ Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/ Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704

In this episode, we sit down with Kate DeForge, who was diagnosed with undifferentiated pleomorphic sarcoma as a young adult. Kate opens up about what it’s been like navigating young adulthood with sarcoma, and shares the mindset and philosophy that have shaped how she lives her life since her diagnosis. We’re also joined by Kate’s sister, Kristen, who offers her personal perspective on being on the sarcoma journey with a sibling. She reflects on her role in Kate’s care and how she helps bring a sense of normalcy to everyday life. It’s immediately clear that Kate and Kristen are a dynamic duo. They balance one another, communicate with the unspoken understanding that only siblings share, and together tell a powerful, honest story of how sarcoma is truly a family disease. Thank you, Kate and Kristen, for joining us and sharing your journey. Subtype Page: https://curesarcoma.org/sarcoma-subtypes/ewing-sarcoma/ Sarcoma Patient Pathways Survey: https://curesarcoma.org/get-involved/sarcoma-patient-experience-survey/ Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/ Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704 Connect with Kate: Kate IG: @blueforkate https://www.instagram.com/blueforkate/

On this episode, we’re joined by Simone Cheatham, a member of the Race to Cure Sarcoma Chicago Committee. Simone became actively involved after her late father, Hardin—lovingly referred to as “Dad” throughout this episode—was diagnosed with sarcoma. Hardin’s journey with sarcoma was unique. His sarcoma diagnosis came shortly after he had already been diagnosed with breast cancer, leading Simone and her family into a complex and uncertain path toward understanding the disease and deciding how best to move forward with treatment. Simone shares what it was like to support her father as a caregiver alongside her mother, offering a deeply personal perspective on navigating a rare cancer diagnosis. Shortly after her father’s diagnosis, Simone’s experience took another unexpected turn when she herself was diagnosed with Hodgkin’s lymphoma. Simone reflects on the stark differences she observed between her own treatment options and those available to her father, and she speaks passionately about why advocacy and research in the sarcoma space are so critical. Simone, thank you for being such a powerful and committed voice in the sarcoma and cancer community, and for sharing Dad’s story with us. Let’s dive in. Sarcoma Patient Pathways Survey Discussion Guide Sarcoma Stories FB Group Connect with Simone: Instagram: @_simonemichelle_ Email: [email protected] LinkedIn: https://www.linkedin.com/in/simone-cheatham/

In this episode, we speak with Julie Harp, who shares her experience as a care partner to her son, Don, during his sarcoma journey and as he approached the end of life. Julie offers a unique and powerful perspective on caring for an adult child through terminal illness. Julie reflects on Don’s path to diagnosis, including misdiagnosis and the feeling of being lost within the medical system. Julie emphasizes the importance of self-advocacy and the need for better systems to help patients navigate the healthcare system and achieve timely care. She also shares how she continues to honor Don’s legacy through her advocacy work, fighting for better awareness, research, and outcomes for sarcoma patients. With courage and compassion, Julie not only tells Don’s story and her family’s experience with sarcoma but also reminds us of the importance of being an audible voice for inaudible voices, as we continue to push for better treatments and hope for all affected by sarcoma. Links Subtype Page: https://curesarcoma.org/sarcoma-subtypes/undifferentiated-pleomorphic-sarcoma/ Sarcoma Patient Pathways Survey: https://curesarcoma.org/get-involved/sarcoma-patient-experience-survey/ Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/ Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704 Connect with Julie: IG @juliejharp Email: [email protected]

We return from winter break and are joined by Crystal Mollica, a malignant peripheral nerve sheath tumor (MPNST) survivor. After receiving an initial misdiagnosis, Crystal trusted her instincts and advocated for a second opinion—one decision that ultimately led to an accurate MPNST diagnosis and life-saving care. That diagnosis resulted in a permanent colostomy, a urostomy, rectum removal, and a partial hysterectomy. Crystal talks about navigating this new normal, adjusting to a different lifestyle, and processing the emotional and physical experience of such major surgeries. She also shares how social media offered education and community during a time when she was searching Reddit and Instagram to learn how to live with a double ostomy. Now, Crystal pays it forward by sharing her own tips, tricks, and encouragement, reminding others that life as a double ostomate can absolutely be full, joyful, and meaningful. This conversation is a powerful reminder of the importance of self-advocacy, especially within rare cancer spaces like the sarcoma community. Thank you, Crystal, for your vulnerability, honesty, and commitment to helping others through your story. Links Subtype Page: https://curesarcoma.org/sarcoma-subtypes/malignant-peripheral-nerve-sheath-tumour/ Sarcoma Patient Pathways Survey: https://curesarcoma.org/get-involved/sarcoma-patient-experience-survey/ Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/ Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704 Connect with Crystal: @double.ostomy.gal

In this episode, we sit down with Carol Haslam of Sarcoma Cancer Ireland. Carol not only is a board member and driving force behind the organization’s operations, but she is also a synovial sarcoma survivor and passionate patient advocate. As our first international guest, Carol offers a deeply personal look at her diagnosis and treatment journey in Ireland. She reflects on the road to getting her diagnosis and then the practicalities of navigating care, stepping away from her career as a florist after discovering the sarcoma was in her hand, and what it meant to raise two young children while facing cancer—all while maintaining the unmistakable humor you’ll hear throughout our conversation. Carol also shares the origin story of Sarcoma Cancer Ireland and illustrates what powerful, grassroots advocacy looks like. From helping bring a sarcoma specialist to Ireland to collaboration across the global sarcoma community, she shows how collective voices can drive meaningful change. This episode is rich with storytelling, insight, vulnerability, and—yes—plenty of laughter. It’s an inspiring and uplifting conversation you won’t want to miss. Let’s dive in! Subtype Page: https://curesarcoma.org/sarcoma-subtypes/synovial-sarcoma/ Sarcoma Patient Pathways Survey: https://curesarcoma.org/get-involved/sarcoma-patient-experience-survey/ Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/ Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704 Sarcoma Cancer Ireland: https://sarcoma.ie/ https://www.facebook.com/sarcomacancerireland https://www.instagram.com/sarcomacancerireland/ https://www.linkedin.com/company/sarcoma-ireland/

On today’s episode, we’re joined by Joel and Amanda Stetler — a dynamic couple from California. Joel has been knowingly living with a low-grade fibromyxoid sarcoma, and in the ten years since his diagnosis, the Stetlers have parented three children, Amanda has pursued a doctorate degree, Joel has navigated career changes, they’ve traveled, and—true to their motto— they have certainly lived loudly. In our conversation, Joel and Amanda share both the patient and care partner perspective on the frustrating journey to diagnosis, what life has looked like since, the honest conversations they’ve needed to have, and perspectives that have helped them continue living loudly, even when life feels most uncertain. Living in the sarcoma world can feel isolating. We often look to one another—patients and care partners who understand this experience—for community, perspective, and hope. Joel and Amanda are the type of people who offer that simply by being themselves, and we’re so grateful they’ve come on the podcast to share their story with our community.A huge thank-you to Joel and Amanda for joining us Subtype Page: https://curesarcoma.org/sarcoma-subtypes/low-grade-fibromyxoid-sarcoma/ Sarcoma Patient Pathways Survey Discussion Guide Sarcoma Stories FB Group Connect with Joel & Amanda: Joel’s Instagram: @hey_mr_stetler Amanda’s Instagram @rhythm_and_light

On this episode, we sit down with Chris Barry, a rare disease patient and desmoid tumor survivor, dad, and civil engineer living in the San Francisco Bay Area. Diagnosed with familial adenomatous polyposis (FAP) as a teenager and later with a large desmoid tumor, Chris has faced immense medical challenges — including chemotherapy, major surgeries, and an intestinal transplant — yet continues to turn adversity into advocacy. Through this conversation and his personal reflections, this episode shines a light on the realities of living with a desmoid tumor and FAP, a diagnosis often described as “benign,” or “not that severe” - a phrase that can be deeply misunderstood. Join Chris as he shines a light on what “benign” can actually mean for a desmoid tumor patient, where his journey took him, and how he became involved in the sarcoma community to help advocates for others who find themselves in a similar position. Links: Subtype Page Sarcoma Patient Pathways Survey Discussion Guide Sarcoma Stories FB Group Connect with Chris: E-mail: [email protected] Instagram @barry.dude

On this episode of Sarcoma Stories, we’re joined by actor Andrey Ivchenko as he shares his powerful journey through a chondrosarcoma diagnosis. While you may not be familiar with Andrey’s sarcoma story, you might recognize him as the villain Grigori in Stranger Things Season 3 or as Perseus in Call of Duty. After being initially misdiagnosed, Andrey's story highlights the critical importance of self-advocacy. In this candid and engaging conversation, we discuss the isolation that can come with a rare cancer diagnosis, the vital role of a care partner, the importance of ongoing research, and how prosthetics are used in sarcoma treatment. Following an extensive hemipelvectomy and hip replacement, Andrey is now in recovery—gaining strength to return to the screen, and using his platform to raise awareness and advocate for the sarcoma community. Thank you so much, Andrey, for joining us and sharing your story. Links: Central Chondrosarcoma, Grades 2 and 3 Stand Up to Sarcoma Gala Sarcoma Stories FB Group Sarcoma Survey Andrey's Facebook Andrey's Instagram