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 3Stand Up to Sarcoma GalaSarcoma Stories FB GroupSarcoma SurveyAndrey's FacebookAndrey's Instagram
We’re back from our summer hiatus with a very special episode to kick off Season 2!August 2025 marked the beginning of SFA’s 25th anniversary year, and we couldn’t think of a better way to celebrate than by going back to where it all began—with a conversation featuring SFA’s three founders: Dr. Mark Thornton, Tricia Thornton, and Dr. Jack Brooks.In this episode, you'll hear the story behind SFA’s founding—from the spark of an idea to the early, humbling days, through years of growth and impact. Mark, Tricia, and Jack reflect on the journey so far, what they’re most proud of, and their hopes for the future of the sarcoma community and the organization over the next 25 years.Listen in—and join the conversation!If you have questions for Mark, Tricia, or Jack, head over to our Sarcoma Stories Facebook Group and ask away. We’d love to hear from you!Links:About SFAFunded Research Through the YearsStand Up to Sarcoma GalaRace to Cure SarcomaSarcoma Stories FB GroupSarcoma Survey
On this episode, we speak with Breon and Leia Glass. Breon, a 29-year-old synovial sarcoma survivor and law enforcement officer, found his tumor while on a foot pursuit. He takes us through his diagnosis journey, the decision for amputation as part of his treatment plan, and how he has adapted to his new normal since then. His wife, Leia, provides insight into supporting a loved one through a sarcoma diagnosis. Together, they emphasize the importance of personal research, living life fully despite a diagnosis, and seeking support. They both highlight the unwavering support from their family and Breon's law enforcement colleagues. There is no doubt that Breon and Leia are strong, but together, they are a powerhouse team. We were fortunate to sit down for this conversation with both a patient and care partner, husband and wife, for the first time on Sarcoma Stories. Thank you to Breon and Leia for sharing your journey and your insights with us.Episode Links: 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/512452631597704Connect with Breon & Leia: https://www.tiktok.com/@hey_rookiehttps://www.tiktok.com/@justleiaaa
On this episode, we’re joined by Emily Oberst, an Ewing sarcoma survivor. Emily shares her experience navigating childhood cancer — from the decision making around surgery as an active young person to considering fertility preservation at an age when most kids are thinking about school, sports, and friends.As she transitioned out of treatment and into young adulthood, Emily found empowerment through adaptive sports. Discovering wheelchair basketball in high school, she’s gone on to become a Paralympic athlete, channeling her strength and determination both on and off the court.A champion on the court and for the sarcoma community, Emily shares insights on finding courage and building confidence,in the face of a life-changing diagnosis.Links:Fertility & Adoption Grants for Cancer Survivors: https://worththewaitcharity.comSubtype 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/Stand Up To Sarcoma Gala: https://curesarcoma.org/ways-to-help/stand-up-to-sarcoma-gala/Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704AYA Facebook Group: https://www.facebook.com/groups/733435902222520Race to Cure Sarcoma: https://curesarcoma.org/race-to-cure-sarcoma/Connect with Emily: https://www.instagram.com/emily_oberst/
On this episode, we sit down with Dan Rubin, who was diagnosed with Ewings sarcoma in 2017 and has since navigated many, many different types of therapies to manage his diagnosis.Dan’s unique record keeping system, which we dive into throughout the episode, along with the incredible support of his wife Katharine, has allowed Dan to navigate his care and advocate for himself throughout the years.Dan has had to make numerous informed decisions about the best courses of action for his treatments - and from clinical trials to taking a more palliative approach - Dan has so much experience to share with the sarcoma community.As a 7 time marathoner, we talk about how exercise has continued to support Dan through his diagnosis and how he’s maintained his positive mindset 95-98% of the time.Links:Ewing Sarcoma Subtype Page: https://curesarcoma.org/sarcoma-subtypes/ewing-sarcoma/Race to Cure Sarcoma: https://curesarcoma.org/race-to-cure-sarcoma/RTCS Marine Corps Marathon team: https://fundraisers.hakuapp.com/teams/sarcoma-foundation-of-america-2?partner=ce52206b901f55550cf5Sarcoma 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/Stand Up To Sarcoma Gala: https://curesarcoma.org/ways-to-help/stand-up-to-sarcoma-gala/Caregiver Connect FB Group: https://www.facebook.com/groups/1342913339758774Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704Dan's Blog: https://rwoac24.substack.com/Dan's LinkedIn: https://www.linkedin.com/in/dan-rubin-48318a17/
On this episode, we speak with Brian Fugere, who is a synovial sarcoma survivor of 20 years. Brian shares his perspective on what the sarcoma landscape looked like 20 years ago at the time of his diagnosis, taking us through his treatment journey and how his marathon running has been an outlet for him to not only give back to the sarcoma community, but also reclaim his life.We are so fortunate to be able to be a part of Brian's reflection and discuss so many topics like what to say to support someone during a sarcoma diagnosis, giving permission to be honest about how you're feeling and the important roles of care partners in our life.Links: Synovial Sarcoma Subtype Page: https://curesarcoma.org/sarcoma-subtypes/synovial-sarcoma/Race to Cure Sarcoma: https://curesarcoma.org/race-to-cure-sarcoma/RTCS Marine Corps Marathon team: https://fundraisers.hakuapp.com/teams/sarcoma-foundation-of-america-2?partner=ce52206b901f55550cf5Sarcoma 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/Stand Up To Sarcoma Gala: https://curesarcoma.org/ways-to-help/stand-up-to-sarcoma-gala/Caregiver Connect FB Group: https://www.facebook.com/groups/1342913339758774Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704Brian’s Email: fugerebrian@gmail.com
On this episode of Sarcoma Stories, we welcome Shaun Nerney—actor, singer, performer, Dorito enthusiast and avid Knicks fan—to share his journey as a care partner to his fiancée, Meghan, who has been living with fibromyxoid sarcoma on the dura of her brain. Shaun reflects on meeting Meghan after her diagnosis, how his role has grown alongside their relationship and her treatment experience, and how running has become both a way to support the sarcoma community and an essential outlet for his own self-care. With his trademark humor and candid honesty, Shaun shines a light on the emotional landscape care partners navigate when a loved one faces sarcoma. Tune in for a conversation that speaks to the strength found in love, resilience and shared experience.Connect with Shaun here: IG: https://www.instagram.com/chronicles_of_nernia/ or E-mail: nerneyshaun@gmail.comSubtype: https://curesarcoma.org/sarcoma-subtypes/myxofibrosarcoma/Sarcoma Centers: https://curesarcoma.org/support-resources/treatment-centers/Sarcoma Clinical Trials: https://curesarcoma.org/support-resources/sarcoma-clinical-trials/Take the Sarcoma Survey: https://curesarcoma.org/get-involved/sarcoma-patient-experience-survey/Sarcoma Stories Facebook Group: https://www.facebook.com/groups/512452631597704Stand Up To Sarcoma Gala: https://curesarcoma.org/ways-to-help/stand-up-to-sarcoma-gala/Race to Cure Sarcoma: https://curesarcoma.org/race-to-cure-sarcoma/Marine Corps Marathon: https://fundraisers.hakuapp.com/teams/sarcoma-foundation-of-america-2?partner=ce52206b901f55550cf5
On this episode, we speak with Margaret Livermore, a member of SFA's Public Policy Committee and a dedicated advocate for the sarcoma community. Margaret shares her experience with leiomyosarcoma, first diagnosed in 2002 and recurring 16 years later. She discusses the importance of self-advocacy for informed decision-making and the value of supporting others facing similar situations.The conversation also addresses systemic inequities that minority patients often encounter within the medical system, exploring how these can create barriers to care and foster mistrust. It underscores the need for continued dialogue within the sarcoma community to ensure all individuals have equitable access to care. We appreciate Margaret's openness in this important discussion.Sarcoma Subtype Page: https://curesarcoma.org/sarcoma-subtypes/leiomyosarcoma/Sarcoma Stories Facebook Group: https://www.facebook.com/groups/512452631597704Sarcoma Patient Experience Survey: https://curesarcoma.org/get-involved/sarcoma-patient-experience-survey/Sarcoma Centers: https://curesarcoma.org/support-resources/treatment-centers/Margaret IG: https://www.instagram.com/fight_like_a_lioness/Margaret FB: https://www.facebook.com/margaret.livermore.3For more information on Margaret's support group, reach out to programs@curesarcoma.org
Join us as we speak with Katie Wintergerst, who shares her personal experience with synovial sarcoma. Katie discusses the importance of seeking multiple opinions at sarcoma centers to make informed treatment decisions and provides valuable insights into participating in early-phase clinical trials. We also explore her journey as a single parent of two young children while living with sarcoma, her impactful advocacy work, her leadership role in the Race to Cure Sarcoma Louisville, and the support she's found along the way. Tune in to hear Katie's powerful story and learn from her experiences.Stand Up To Sarcoma Gala: https://curesarcoma.org/ways-to-help/stand-up-to-sarcoma-gala/Race to Cure Sarcoma: https://curesarcoma.org/race-to-cure-sarcoma/ Synovial Subtype: https://curesarcoma.org/sarcoma-subtypes/synovial-sarcoma/Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/Sarcoma Centers: https://curesarcoma.org/support-resources/treatment-centers/Sarcoma Clinical Trials: https://curesarcoma.org/support-resources/sarcoma-clinical-trials/Take the Sarcoma Survey: https://curesarcoma.org/get-involved/sarcoma-patient-experience-survey/Connect with Katie here: https://www.facebook.com/katie.kaiser.773 or https://www.instagram.com/katiewintergerst/Sarcoma Stories Facebook Group: https://www.facebook.com/groups/512452631597704
On this episode we speak with Jenny Sage, a parent of a pediatric sarcoma survivor, Gracie. Jenny shares her perspective on advocating for children with sarcoma and others in the sarcoma and pediatric cancer communities. We discuss supporting children and families through a sarcoma diagnosis, the importance of emotional processing, and ways to help others. Jenny’s Instagram: @jgoodmansagehttps://www.instagram.com/jgoodmansage/Jenny’s LinkedIn: https://www.linkedin.com/in/jenny-goodman-sage-333200a4/CIC-DUX4 Subtype: https://curesarcoma.org/sarcoma-subtypes/cic-rearranged-sarcoma/Sarcoma Patient Experience Survey: https://curesarcoma.org/get-involved/sarcoma-patient-experience-survey/?fbclid=PAZXh0bgNhZW0CMTEAAaYWR9Zq2nOoOAxRVn6dJ78MeJ2nAVrq29fKMIGAcuToCKD2JxCQTLEbP4A_aem_5lsjjYo6Ug28apsTbN-mjwSarcoma Stories Facebook Group: https://www.facebook.com/groups/512452631597704Caregiver Sarcoma Connect Facebook Group: https://www.facebook.com/groups/1342913339758774Advocacy Weekend: https://curesarcoma.org/get-involved/sarcoma-advocacy/sarcoma-advocacy-weekend/Sarcoma Centers: https://curesarcoma.org/support-resources/treatment-centers/SFA Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/
Mike Cacioppo, diagnosed with osteosarcoma in 2021, shares his experience of being a part of the sarcoma community as well as the amputee community and how advocacy for both has become a part of his life. He also talks about parenting while navigating a sarcoma diagnosis and how he maintains an optimistic mindset through all of the challenges he's faced.Mike's Subtype: https://curesarcoma.org/sarcoma-subtypes/osteosarcoma/Sarcoma Stories Facebook Group: https://www.facebook.com/groups/512452631597704/Mike's Instagram: https://www.instagram.com/mikec829/RTCS Boston: https://curesarcoma.org/bostonSarcoma Survey: https://www.surveymonkey.com/r/SFASarcomaSurveyIRB Protocol ID 0686
On this episode, Maria shares the sarcoma journey of her daughter Aubrie, who was diagnosed with CIC-DUX4. Maria speaks about the diagnosis experience of a teenager, including having conversations about fertility preservation before starting chemo and ways she's honoring Aubrey after her passing. While working to fulfill her daughter's bucket list, Maria has also been the driver for helping SFA bring the Race to Cure Sarcoma to Austin, Texas for its inaugural Austin race on March 22nd, 2025.Content Warning: Death from sarcoma, death of a child.Aubrie's Subtype: https://curesarcoma.org/sarcoma-subtypes/cic-rearranged-sarcoma/Sarcoma Stories Facebook Group: https://www.facebook.com/groups/512452631597704Caregiver Connect Facebook Group: https://www.facebook.com/groups/1342913339758774RTCS Austin: https://secure3.convio.net/soa/site/TR/RacetoCureSarcoma/General?fr_id=1454&pg=entryAll RTCS Locations: https://curesarcoma.org/race-to-cure-sarcoma/Sarcoma Survey: https://www.surveymonkey.com/r/SFASarcomaSurveyIRB Protocol ID 0686
In this episode, we speak with the Brenneman family who lost their father and husband, David, 12 years ago. We discuss the care partner experience of navigating a spouse's sarcoma diagnosis while also raising young children and what it has been like for the family to find connection to David after his passing. The Brenneman family shares about how this experience has fit into their lives and evolved over the years and talk about their unique experience walking the Camino de Santiago to raise awareness and funds in support of the sarcoma community. Thank you to the Brenneman family for sharing their story and allowing us to be a small part of honoring David's legacy.content warning: death from sarcoma, death of a parent, death of a spouseAJ's Blog: https://www.200-miles-closer-to-dad.com/David's Subtype: https://curesarcoma.org/sarcoma-subtypes/alveolar-rhabdomyosarcoma/https://imermanangels.orgSarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704
We're thrilled to welcome Susie Donohue, a uterine leiomyosarcoma survivor, for our third episode! We talk about navigating a new sarcoma diagnosis, what exactly a sarcoma center is, and the decision to disclose or not disclose your diagnosis at work.Join us after the episode on our new Sarcoma Stories Facebook group to discuss the episode. https://www.facebook.com/groups/512452631597704Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/Sarcoma Centers: https://curesarcoma.org/support-resources/treatment-centers/Race to Cure Sarcoma: https://curesarcoma.org/race-to-cure-sarcoma/Facebook Group: https://www.facebook.com/groups/512452631597704Where to connect with Susie:IG: @susie.donohueLinkedIn: https://www.linkedin.com/in/susie-donohue-9286579/FB: https://www.facebook.com/susie.donohue.9
We're thrilled to welcome Jenna Pothier for our second episode! Join us as this DFSP survivor shares the importance of shared decision making between care team, patient, and care partners. She also talks about the challenges of being an adolescent young adult going through a life changing diagnosis during big life transitions, finding supportive communities and purpose in advocacy work, and shares her advice on supporting someone during their sarcoma diagnosis.Join us after the episode on our new Sarcoma Stories Facebook group to discuss the episode. https://www.facebook.com/groups/512452631597704Where to connect with Jenna: IG: @jennapothier19TikTok: https://www.tiktok.com/@jpot13
Join us for our first episode of our new podcast "Sarcoma Stories". We're thrilled to welcome our first guest, Natasha Allen! Join us as this synovial sarcoma survivor shares her inspiring journey, from diagnosis and clinical trials to using social media as a therapeutic tool and platform for awareness.Join us after the episode on our new Sarcoma Stories Facebook group to discuss the episode. https://www.facebook.com/groups/512452631597704Where to connect with NatashaIG: @natashaallenTikTok: https://www.tiktok.com/@possiblynatasha
Our new podcast is launching soon.Sarcoma Stories PodcastSFA created the “Sarcoma Stories” podcast to highlight the voice and experiences of patients, survivors, and care partners. The people directly affected by sarcoma.Connect with others who share a sarcoma journey. Share in their story and connect with a community.The landscape of cancer related podcasts focus mainly on the medical, research, pharmaceutical, and other expert voices. However, there is no sarcoma podcast that is designed to share the voice of those directly impacted by a sarcoma diagnosis and their stories and experiences.“Sarcoma Stories” is a resource for those seeking connection, community, education, information from the personal accounts of individuals. These stories also help to raise awareness about the impact sarcoma has on the lives it touches.