Sarcoma Stories

• Shaun Nerney

  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: [email protected]: 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

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• Margaret Livermore

  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 [email protected]

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  1:14:23
• Katie Wintergerst

  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

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  58:42
• Jenny Sage

  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/

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  45:46
• Mike Cacioppo

  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

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  47:26

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