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.com

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/

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/512452631597704

AYA Facebook Group: https://www.facebook.com/groups/733435902222520

Race 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=ce52206b901f55550cf5

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/

Caregiver Connect FB Group: https://www.facebook.com/groups/1342913339758774

Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704

Dan'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=ce52206b901f55550cf5

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/

Caregiver Connect FB Group: https://www.facebook.com/groups/1342913339758774

Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704

Brian’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.com

Subtype: 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/512452631597704

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/

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/512452631597704

Sarcoma 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.3

For 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-mjw

Sarcoma Stories Facebook Group: https://www.facebook.com/groups/512452631597704

Caregiver Sarcoma Connect Facebook Group: https://www.facebook.com/groups/1342913339758774

Advocacy 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/boston

Sarcoma Survey: https://www.surveymonkey.com/r/SFASarcomaSurvey

IRB Protocol ID 0686